Choice And Voice?

4/27/2012 11:21:00 am BenefitScroungingScum 6 Comments

Two became one! Hurrah! Well, apart from the deeply annoying Spice Girls earworm typing that has created. I'd throw in another hurrah but my brain is currently in some sort of mid 90's flashback. After tuesday's visit to an outpatients department that felt like walking through the door into the 1970's* this is probably a fitting, NHS inspired tour of the decades. 

So, yesterday morning sense prevailed and a nice admin lady phoned to explain that not only was there no way of getting my notes to the two hospitals as patients are still absolutely not allowed to go anywhere near their own notes without applying in writing, but that they'd also booked me in with the wrong consultant so did I want to rearrange. I did and now I've got an apppointment with the nice rheumatologist in about three weeks time. The difference in the way the NHS performs when poorly paid, and generally poorly treated admin staff have the freedom to use their extensive knowledge and common sense organising skills is astonishing. Focusing on that kind of issue from the bottom up, allowing these excellent and dedicated staff members to suggest practical, locally based improvements would certainly improve both NHS performance and experience. However, no-one in government actually listens to me, or anyone else floating around the 'bottom' of the system because it's really far to important to impose top down, opposed by almost everyone, 'we promise we won't do this' reorganisations.

Only having to get myself to one appointment made a big difference to my day. I was able to fit in an early nap, cope with scooter hoisting in the rain, and having previously met Dr Breathe I wasn't overwhelmed with "they think it's all in my head" anxiety. 

The other big difference was that yesterday's staff demonstrated how to communicate well with patients, in complete contrast to tuesday's experience. It's important to say that Dr Heartsink wasn't in any way unpleasant and although he said some rather odd things, there was clearly nothing behind that apart from a need for some communication skills training. In many years of accessing healthcare, both here and for a short period in the USA I have seen my fair share of outright crueltly to patients. Cruelty crosses a very obvious line, often created by understaffing and poor leadership, but its also very distinct from someone saying things that are really no more than a bit daft.

So, back to the 'how to communicate with patients' experience. When I arrived at outpatients yesterday there were a few people waiting, and shortly afterwards a nurse appeared to explain to people and write on the board that clinic was running 55 minutes behind. Anyone who's spent much time in hospitals knows this is either because the clinic is in utter chaos, or because it's running brilliantly and the consultant is choosing to give each patient as much time as they need, not the alloted time. Several people in the waiting room grumped and snarked about the delay, but I'd found the open staff wi-fi so was quite happy.

A nurse came to take me off for the weighing, measuring, blood pressuring ritual. When we got into the room there was no lock on the door and my sleeve wouldn't roll up enough for the blood pressure cuff, so my top had to be lifted over my head. So, without being asked, the nurse popped out, found another member of staff and asked them to stay outside the door. Just in case I was accidentally exposed. I was very impressed. When I had my bloods taken on tuesday the guy spent quite some time extensively scratching his balls before picking up the torniquet. My dilemma of whether to vomit on him or say something was solved by him putting a glove straight onto the scratching hand, but still. It's not really what you want to see a hand doing before it shoves a needle into your arm.

Measuring and examining over the nurse walked me the few steps back to the waiting room and continued with her work, part of which seemed to be popping back occasionally to check on the mood of the waiting room and keep people updated on the wait. The staff were keeping the waiting room updated after each patient came out, and at one point another nurse offered to make me a cup of tea. If you're a 'not yet disabled' person who's sat in a hospital waiting room and wondered why the occasional patient gets brought a hot drink its because well trained, caring medical staff can spot the patients who aren't able to go off and get their own drinks and often look like they could do with a good meal. Or patients who the staff don't want to let go off alone because it'll make them more poorly. Outpatients is a bit of an odd place to work as a nurse, you get judged by ward nurses as it's perceived as 'easy' but the potential for patients shouting is just as high as on a ward. What outpatients don't tend to get is the experience of much continuing care, so the nurses usually know any of the long term patients. In Dr Freak's clinic, the outpatient nurses usually greet me with a big hug, because of the gap between appointments they get to see patients conditions fluctuate in a way many other staff don't and so delight in any progress made, however minor.

There is a point to all this NHS fluffiness - I wasn't particularly anxious. And a patient who's not anxious doesn't carry that anxiety and negative expectation in through the consultation door with them, for it to then be projected onto a doctor derailing a consultation before it even begins. No doctor, however well trained can deal with decades of anxiety caused by other doctors being projected onto them, particularly when they don't even know the patient is anxious in that way.

So, eventually I saw Dr Breathe. We had a bit of a chat, well, one of us spoke, one croaked but you get the point. Unsurprisingly all my test results are ok. I can tell from the measuring results that Dr Breathe has a slightly relaxed definition of ok which is great, because it means not endlessly investigating things that are miniscule measurements away from the defined 'normal' in someone who's body doesn't do normal. Chest x-ray is clear, breathing tests mostly clear, and bronchoscopy was fine. I'd expected all that as Dr Breathe had been looking for something obvious affecting my ability to breathe and speak such as a stricture. So, that left us back where we started; laryngeal malacia issues caused by hypotonia. In normal person speak that means my larynx is collapsing on itself and my muscle tone is so poor the structures of my throat aren't properly held in place, move about alot and then interfere with my breathing when the soft tissue spasms as a result. Although there is nothing wrong with my lungs per se, the infections are caused by my chest muscles being too weak for me to breathe properly most of the time. When that happens all the natural secretions sit and hang out having germ parties in the bottom of your lungs. Its dangerous because if your muscles are too weak to breathe properly, they're often too weak to sustain coughing properly. The laxity of my tissues and obvious gap when I swallow witnessed by ENT means I'm also prone to aspirating food, liquid or saliva which is the preferred way for bugs to organise illegal raves in your lower lobes.

Some more croaking ensued about what to do when the muscles spasm so badly it cuts off my airway. I explained my clear preference was to hide at home avoiding hospital at all costs. Dr Breathe conceded he didn't have a better plan. There is no medication or surgery which can treat this problem apart from antibiotics for acute infections. The only possible source of help and improvement is specialist Speech and Language Therapy (SALT). I've been on the waiting list for that specialist intervention since Christmas, and without normal speech since October. Had I been in work say as a teacher or call centre worker and had to sign off sick after a week or so of this new problem I would now be six months into my twelve months time limit for contributory ESA, with no real sign of when treatment might be. Dr Breathe did say we could if I wanted try various inhalers but that he didn't think they would make any difference. Neither do I, and as I don't require the only difference they might make, which is the psychological semblence of having some control over the situation we both decided not to bother and Dr Breathe said he'd chase up SALT. Again. SALT was under funded during the New Labour years and not subject to the same kind of targets as being seen by a consultant, so although it's the only potential source of help for me the waiting list is indefinite.

What we did spend some time discussing was the requirements of the DWP to know about this particular problem, in black and white, preferably in triplicate. Not only do the DWP need to know what the problem is, but they also need to know that there is no medicine or surgery which can help it, and that its not going to get better. Hopefully it will improve, but with EDS there isn't an actual 'better' point and improvements tend to fluctuate over time back to not improvements. Dr Breathe is going to explain everything in a letter for my GP and rheumatologist so will include the DWP details and send me a copy to keep it on file for the next time my benefits are looked at.

I said my thanks to Dr Breathe and we parted company. I don't have to go back to see him unless something changes. Despite negative tests and the usual medical bafflement a bendy body causes, at no point did Dr Breathe make me feel disbelieved or negatively judged. He also understood the need to provide information for the DWP in writing. This means that I won't have to use up my time or his contacting him for a letter to provide to the DWP in a year or so's time when I'm no longer his patient and he's forgotten all the details.

Unfortunately just as I've shaken off the respiratory department I've fallen into the clutches of gastro-enterology and I don't think ENT are in much of a hurry to release me either. I'm very relieved Dr Heartsink thought it was a bad idea to stick tubes up and down a bendy person, but I do have to go through a barium meal and ultra-sound. I'm negative about this as I have previously been through the barium meal, ultra sound, head shaking, referral to dietician merry go round and have learnt as much as is possible from the experience about how to manage symptoms and maintain my weight. If it wasn't for the insistence of the DWP on reassessing everyone endlessly I might have had the confidence to have that conversation with my doctors and some of these tests might not have been needed.

What I do have is the confidence of almost a decade as a diagnosed EDS'ers, the knowledge and understanding that brings in terms of symptom management. I've had lengthy periods of time in this type of relapse, where I'm so extensively hypotonic that my body struggles just to perform basic functions. I've previously lost speech for a period of time, although in a very different way to this current problem I have managed to relearn to talk myself without support from SALT. It took several years of drudgery before I could see any realistic improvement last time, and this time round I can take comfort from not having to learn anatomy, physiology, medicine, physiotherapy and speech therapy alone, from scratch myself. This time I knew how to avoid becoming so weak that I had to spend months using a wobble cushion, adding 30 seconds on each day until I could learn to take one step more a day, and cope with the crushing disappointment on the days the steps only went backwards. This time I know I can do this, because last time I did it too. This time I know not to worry about being 'better' or 'fixed' because there is no such thing for people with EDS, but that there are improvements to be made, that eventually with enough time and effort life will get a bit easier. This time I know that just pushing myself harder and harder will never work, and that as much as I don't want to, I have to make this my day to day priority. That's dull and dreary at the best of times, but particularly galling at a time when finally potential opportunities to work may be on the horizon. This time I know that wanting to focus on writing, speaking and campaigning so much that I can't even bear to type out the alternative won't help. That I have to suck it up and spend alot more time looking after myself. That despite all my protestations of campaigning being just from home in my pyjamas so it's fine and not damaging my health, that I can somehow figure out how to work in my jammies from home floating on an oramoprh cloud...well, wanting something to be so does not make it true.

And really, that's why I don't want to have to go through more tests and hospital trips. With a long term degenerative condition such as Ehlers Danlos Syndrome, this is just the card life dealt me. I'd prefer to spend my time playing that card to the best of my ability, not having to go through hoops mostly to satisfy the Department of Work and Pensions insistence that people like me will be repeatedly and regularly reassessed. At the end of each of those hoops I get issued with exactly the same card, and life is just too short to keep going back, fruitlessly asking for another one. I just wish those making welfare policy actually understood that, but they had the good fortune to be dealt a winning hand in the game of life, and that winning hand means you can never understand what it is like to be issued with a losing card.

*In a nice way - it's a little on the tired side, but clean, small, friendly & staffed by very long term volunteers.


Two Hospital Day

4/26/2012 09:57:00 am BenefitScroungingScum 2 Comments

Two hospital day has arrived. That's two different appointments, with two different specialities, in two different hospitals only two hours apart. The 'what can possibly go wrong' possibilities for this scenario are endless. Fortunately I left my 'new doctor' anxieties behind on tuesday, having met both of these doctors previously I know all I really have to worry about are the practicalities. My rheumatologist is a lovely, gentle man who even if he did think it was 'all in your head' is more the type to sit and hold a patient's hand while they cry rather than being unpleasant to them. My respiratory doctor is not the hand holding type but medically rather good and possessed of sufficient communication skills to be relatively easy to talk to. So, you'd expect it all to be fine, but I've finally reached the understanding that three decades of being labelled a crazed, attention seeking malingerer has probably left permanent scars on my psyche. Unlike physical scars a bit of rubbing vitamin E oil in won't help much, so like other patients in this situation, its for us to develop the coping skills and learn not to project that anxiety onto the doctor. Some days I am better at this than others...meeting Dr Heartsink not being one of those days!

So, really its the practicalities causing me to stress. Since October I've barely ventured out of my pyjamas, and on the rare occasions I have there has been someone with me all the time so all I had to do was sit in the wheelchair and be pushed. That doesn't sound too energetic but has still completely wiped me out, so the prospect of today is daunting.

I have to drive myself to hospital 1 and park in time for my appointment. Then, unload the BendyBus (mobility scooter) using the power hoist. This involves standing for about two minutes, a bit of fiddling to detatch the power hoist attachmenty things then putting the hoist away. It really doesn't sound like much, but it is quite the challenge for a bendy, exhausted body. Then there's the getting into the hospital over the usual pavement bumps which each have the potential to dislocate multiple joints. The sitting in the uncomfortable scooter or chair while waiting, the getting up to see the doctor, sitting down, being examined, getting back up again, leaving, hopefully on time to load the BendyBus back into the BendyVan before driving to hospital 2 and repeating the whole process. This also unfortunately coincides with the time of day that my body usually demands to be horizontal, drugged and unconscious for a minimum two hours so that could also be interesting!

I had asked a friend if they could take me, but the appointments time clash with family duties and unsurprisingly my big society network all tend to do that activity we call 'paid work' during which bosses usually frown upon people taking a half day to perform their big society volunteering roles. It's not like a 10 minute lift to drop me off at the hospital, it's a big ask. Hours spent sitting in waiting rooms, pushing a wheelchair around, loading and unloading a wheelchair etc. So, its down to me. Fortunately Disability Living Allowance means that I have a mobility vehicle equipped to take a scooter so I can take myself and pay the price afterwards. When Personal Independence Payment is introduced, like many currently entitled to high rate mobility allowance and therefore the motability scheme I may well not qualify for the enhanced rates of PIP and so lose my car.

If that does happen, like everyone else in this situation I will have no choice but to use patient transport for appointments. I won't be able to pay for taxis as that would have come from DLA money. So, each time I have an appointment I'll have to contact my GP to arrange patient transport. Patient transport is an ambulance 'bus' that goes all over the place collecting people and delivering them to hospital. Patient transport does not really pay attention to appointment times, so if you have an 11am appointment at a hospital 10 minutes travel time from home its very likely patient transport will turn up to collect you at 7am. And then shout at you for not being ready. Not that I have ever had that specific experience or anything.

All those old people you see abandoned for hours in outpatient clinics, looking woebegone and neglected? They're waiting for patient transport. In the past I've given water to such patients who've been left ignored for hours on hot days waiting for transport services. It's impractical, designed to fit around people who are old or have nothing else to do but be 'sick' and very definitely won't allow for only taking a half day off work to attend an appointment for those without transport who are trying to remain in work. It's also not any cheaper than leaving people with DLA and mobility vehicles, which are a significant part of new car sales in the UK. Something the Chancellor clearly hasn't heard about...if half a million people lose their DLA, and only 250,000 drop out of the motability scheme...well, that's quarter of a million new car sales not happening with subsequent consequences for the economy. I have in the past tried to ask senior car industry people what impact this might have...they scratch their heads, tell me I'm wrong and then go away with that pinched, stressed look currently sported by most of the Cabinet which translates to 'dammit, she is right and we haven't considered that'.

So...two appointments. If I'm lucky the batteries on the scooter won't pack in leaving me stranded...but at least if they do I'll be in a hospital where there are people around. Hopefully someone will see sense at hospital one and send the notes with me to hospital two otherwise I fear the NHS will simply be tipping the cost of a consultant's appointment down the drain through its stubborn insistence that I must not go anywhere near my notes. Finger's crossed for some common sense!

Update 1100: Common sense has prevailed! A very lovely, very sensible admin lady phoned and has rearranged my rheumatology appointment for later this month. And promised to ensure my notes make it to the right appointment this afternoon, thanks lovely admin lady!


The Orwell Prize 2012 - Shortlist

4/25/2012 07:04:00 pm BenefitScroungingScum 5 Comments



I've been shortlisted for the Orwell Prize 2012 (Blogging)! In much the same way as I celebrated being longlisted there has been oramorph, sleeping and attempting to console a very sulky BendyCat who's considering a plagarism action as the true author of all my blogs.

The awards ceremony is Wednesday 23rd of May. Excitement about that is scheduled to begin once I've figured out if and how I can attend, which will sound significantly less "woe is me" if you've read my blog entries about trying to travel anywhere as a disabled person!


Blogs entered:

What's in a word? 

Welfare bill ignores reality of disability

Sitting targets for the government's welfare reforms 

 Robin on the road - life can change in an instant

The Broken of Britain - Six months on the road to justice

Govt's welfare reform bill trick stinks of injustice

Imagine you're four... 

Its no wonder politicians are ignorant about the trials facing the disabled traveller

Disability benefit reform: is the government hiding behind Atos errors?

Get out of your comfort zone, disability living allowance cuts are relevant to all



John Pring's Disability News Round Up - Week Ending 20/04/2012

4/25/2012 10:02:00 am BenefitScroungingScum 0 Comments

·         The knock-on effects of the government’s huge cuts to spending on disability living allowance could wipe out every penny of the savings it is hoping for, according to a new report.
·         Sports governing bodies must do much more to encourage disabled people to play sport regularly, according to the cabinet minister responsible for the London 2012 Paralympics.
·         Disabled activists have again brought traffic chaos to central London by chaining their wheelchairs across busy pedestrian crossings in protest at government cuts and welfare reforms.
·         Four disabled activists have resigned from the board of the UK’s leading disabled people’s organisation following a disagreement over its future direction.
·         Leading price comparison websites are ignoring their legal obligations to make their sites accessible to disabled people, according to a new report.
·         A disability charity is calling on the banking industry to do more to make its services accessible to blind and partially-sighted people.
·         Coalition MPs have overturned changes to government legislation that would have made it easier for many disabled people to apply for legal aid.

For links to the full stories, please visit Disability News Service


"Oh! You're in your buggy now"

4/24/2012 01:23:00 pm BenefitScroungingScum 12 Comments

I love the NHS. I'd better get that bit in quickly before someone accuses me of being selfish, spoilt and not being grateful for free healthcare. I am definitely the grateful bit, and very definitely not in favour of the current Coalition car crash style of 'reform' but oh dear god does the NHS need reform.

I had a hospital appointment this morning with a new consultant. Given the many years and many ways I've heard the popular diagnosis of 'its all in your head' prior to being diagnosed with a very definitely not in my head genetic collagen disorder, it is safe to say new doctors make me anxious. Hospitals, nurses and early mornings also make me anxious so I was grumpy and stressed before the appointment and very probably pre-disposed to tantrums. Spotting a doctor who had previously been so convinced I'd made up my diagnosis of EDS that he decided I'd faked the official diagnosis letter included with my notes stressed me out further, even though I knew I wasn't seeing him. Listening to an elderly, disabled man's welfare woes in the waiting room was also a joy. Especially the bit where he told me that people who get full benefits get all the services they need. I rather icily informed him that I receive full benefits but share the exact same challenges he faces in accessing social care support and inwardly wept at the outstanding political success of the 'saint v's scrounger' rhetoric.

You get the point. I am a right narky nark today. It is entirely possible that I would have sulked regardless of the outcome of this appointment, but in a generous mood the heartsink doctor* donated several reasons for me to snark at. Again, not to his face. I find passive aggressive icy politeness much more effective than shouting. That is only partly because I can't produce more than a croak.

After a brief history and examination Dr Heartsink informed me that he didn't think there was anything wrong with me that wasn't me. Um...ohhhhkay. I'm not entirely sure what that was supposed to mean but after encyclopeadic experience of the ways doctors can say 'it's all in your head' I'm going with some form of 'its all in your head'. A more generous interpretation would be that there's nothing wrong with you aside from the problems Ehlers Danlos Syndrome causes but I'm not feeling generous. I expect doctors with many years experience to be able to use words like 'genetic' or 'collagen' if that is what they mean.

At this point I was distinctly unimpressed with Dr Heartsink, who proceeded to add to my woes by re-ordering the barium swallow I thought I'd got out of when ENT ordered it by allowing respiratory to do a bronchoscopy. Yes, I know the two tests are completely unrelated and show totally different things but that is not the point. They are all tests I've had before, that haven't shown anything up and have no desire to have again. Mostly because having such tests won't make it onto anyone's bucket list, but partly because I've been through this process many times and my heart sinks at the NHS spending money on it all over again. I am also to have an ultra-sound because the one they did last year is out of date now. There are valid medical reasons for repeating these tests I'm sure...but I'm too busy throwing my toys out  and don't want to know them! 

Assuming the tests don't show up anything nasty then apparently my GP will be able to take it from there and I won't have to go back to see Dr Heartsink. This pleased me so much that I didn't feel like explaining to Dr Heartsink that my GP is a lovely chap, but 'taking it from there' is not his forte. Nor did I point out that referring a patient to a dietician is only going to be of benefit if said patient has the ability to follow that dietary advice. It tends to be awfully practical and involve skills I do not possess. Like the functional ability to prepare and cook food. These however are not issues for a consultant to address, or even something that they would consider. The dietician will scratch her head quite a bit, wonder if getting social services in might help, then dump the problem back on me...hopefully not having taken it upon herself to actually contact social services as their input can only make the situation worse and the only answer any of them will come up with is 'ready meals'. Its that kind of healthy eating that the new Personal Indepdence Payment was predicated upon. So people like me who've managed to avoid some of these issues by being able to use money from Disability Living Allowance to buy more nutritionally balanced ready prepared food won't be able to do that any more. Instead we'll bounce from GP, to consultant, to dietician, to Occupational Therapist probably via Social Services and back round again while everyone mumbles about it not being their area, oh and the cuts, and the patient doesn't get fed. I have learnt this lesson well and know the choice is usually between eating food that isn't necessarily nutritionally the ideal option for me or not eating because I can't prepare it for myself.

Fortunately for all concerned I kept this stream of stroppy consciousness to myself, thanked the doctor for his time and left. I was given forms for an ECG and blood tests, then the nurse added that I'd be called in for a chest x-ray. At that point the desire not to glow in the dark kicked in and I queried whether I had to have a chest x-ray only a month after the last chest x-ray. I'd got onto my mobility scooter by this point, so the nurse asked me to reverse back up the corridor so Dr Heartsink could decide about the x-ray. Looking up from his desk Dr Heartsink exclaimed "Oh! You're in your buggy now!" which to date is the most interesting way I've heard a doctor describe a mobility scooter. Although I am a bit of a short arse it's not as if I've got pram toys hanging from it which could lead to that kind of understandable confusion.

 Whilst I was waiting for ECG and bloods the receptionist came to find me to check whether I am attending both of the hospital appointments I'm scheduled for on thursday afternoon. After confirming that yes I am, yes they are both at different hospitals and yes I had tried to change the date we got to the point which was how to transport my notes between the two sites when the appointments are only 2 hours apart. I suggested that perhaps I could take the notes with me when being driven from the first to second appointment but that is not allowed as I am a patient. I might after all eat my notes for something to do in the car. Or read them. The possibilities of what I could do with a pile of notes entirely about myself, weighing almost as much as myself are frankly endless. So instead a nice man with a van will have to drive from one hospital to the other to collect the notes and we'll all hope they turn up at either or both consultants appointments...cos to be fair to the doctors, running a consultation without any notes is a bit tricky. Not to mention potentially wasteful of money or any such practical considerations.

After a jolly time of some more blood taking and 'just lift your top up now sweetheart'** I had to go and deal with the car park paying machine...which involved having to block the main corridor of a hospital because clearly no-one realised people using mobility aids take up more room. Still snarking to myself I managed to hoist the scooter and got ready to dislocate my shoulder enough to be able to reach the ticket machine from the car. A very sweet old lady was in front of me getting quite stressed about the ticket machine. Which she'd broken. She'd also called for help, but there was no sign of it other than a growing queue of cars. Most of the drivers sat patiently realising what had happened and one or two male drivers appeared to squint at the machine and mumble in that practical man manner. The old ladies stress levels were visibly rising with every additional car, but it was the male driver right at the back of the queue who got out to scream and shout which seemed to finish her off. The helpful men went off to be helpful and intervene between the old lady and shouting man who continued to rant while the old lady reversed her car up and drove over the pavement to get around the barrier. At which point the security guards arrived and blamed me for breaking the machine!

All in all its been an awsome day so far. And did I mention how much I love the NHS......

*Heartsink doctor is a wonderful description. I'd take credit for it but I blatantly stole it from Hossylass
**The nurse...not random builders!


I'll Stand By You? By Kaliya Franklin & Dawn Willis

4/17/2012 11:06:00 am BenefitScroungingScum 14 Comments

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has" 

What does 'disabled' mean? Is it all about wheelchairs and white sticks as so often the public perceive or is that perception fed by the history of the disability rights movement, which was dominated by physically disabled, educated, white, middle class men? Asking around my friends, I get all kinds of interesting answers. Most disability campaigners would agree that 'disabled' covers a multitude of life affecting conditions, whether they be conditions from birth such as spina bifida or a learning disability, accidents later in life, chronic illness and mental health conditions. But when I ask my not yet disabled friends they give very different answers. Commenting on the recent Channel 4 show, The Undateables, my friends told me how inappropriate they thought it was to include Carolynne, an attractive blonde lady who happens to use a wheelchair alongside those with profound facial disfigurements or learning disabilties. There was no suggestion that Carolynne wasn't disabled, but a very clear recognition from the 'not yet disabled' world that the challenges she faces as a result of her disability have marked differences from other groups of disabled people. 

This leads me to wonder, perhaps the 'not yet disabled' world have a much better grasp of the vastness of disability than we disableds give them credit for, perhaps more so than we disableds appear to be demonstrating at the moment to ourselves and the wider world via the very public platforms of social media. 

It's a frightening and stressful time for disabled people as benefit cuts begin to bite and disability hate crime rises. Frequently demonised by both the media and politicians, for many of us isolated from the mainstream world by ill health or lack of equipment and support, social media is our only option for making friends and forming support networks. Fear and stress create a toxic environment, which often bubbles over into online spats which spiral rapidly out of control. 

For ALL disabled people the next few years will be challenging, as we will be the first to be forced through Cameron's Big Society experiment, to rely more upon our communities and less upon the state, regardless of the appropriateness or safety of that community support, if it can even be found. Ironically, it's been disabled people who've demonstrated that ability to build community support over the past two years, coming together to campaign on shared issues, whilst putting aside our differences. That's what any government most fears - a cohesive protest movement who are capable of agreeing to disagree to form a strong coalition of opposition. 

That will be our most pressing challenge over the next few years, to find the wisdom and maturity to learn from our mistakes, and those of others and apply those lessons to our own situation. We know that early disability rights campaigners made the mistake of distancing themselves from those with learning disability or mental health problems. We are able to understand the reasons which led those early campaigners to choose that path, and with hindsight we have benefits of judgement they did not, as will future campaigners from our misjudgements. For contemporary disabled people, we know our biggest chance of success in the continued struggle for full equality is to unite all disabled people, there are at least 10 million of us in the UK alone. Most of those people will not be entitled to benefits, but they are entitled to protection under the law as disabled people, whether that be in challenging physical or attitudinal barriers. 

We can celebrate the diversity of our disabled movement and culture, learn to use our skills to support each other practically and emotionally, but most importantly we must be able to disagree constructively and respectfully. The recent Remploy closures highlight this potential division - charities and organisations which act for, not on behalf of disabled people argue that this is a neccessary step towards progress, whilst distraught workers weep at being sacrificied on an altar of an ideal world. Grassroots disabled campaigners have shown a maturity of judgement by expressing their preference towards mainstream employment at the same time as supporting those who make another choice for themselves.

Choice is at the heart of this issue. All disabled people, whatever the reason they are disabled want freedom of choice to live our own lives as we decide. Disabled people are more aware than any other group what it is like to be told what is best for us by people without direct experience of disability. We hate and resent it, but then all too often go on to apply that 'what is best for you' attitude to other disabled people. 

The biggest choice we have to make at the moment is whether as a civil rights movement we are able to set aside our differences, to recognise the dangers inherent in labelling one person as more or less disabled than another and to continue to band together as the strong, powerful force we have shown we can be.

Our choice is simple;

"Alone we whisper" or "Together we shout" 

Kaliya Franklin

This is a really encouraging post reminding us all of why we came together in the first place. It is enough already that the Government has chosen to allow untrained DWP and ATOS staff to determine how 'disabled' people are, and in turn how deserving they are of welfare benefits, and to define work and capability. As a campaigning movement we can't afford to be seen to be divided.

In just one week I have learned of the devastating effects of both welfare benefit changes and mental illness on two people who live close to me:  A mentally ill lady who learned that her Disability Living Allowance assessment had resulted in her being removed from the benefit, which meant her income support was stopped, and in turn her housing benefit, She's unwell, and in complete panic simply left her rented accommodation. She's now homeless. The other a 'working' man in his thirties, who had struggled with depression took his own life, leaving behind a heartbroken young family.

There are many similar tragic stories which involve people whose disabilities are not evident to the eye, but for whom the struggle to manage their lives is equally, if different, to cope with than people with a physical illness.  It's also important to remind each other that the mind and body are connected, and in for many individuals with a physical illness or disability, mental health difficulties become something else they have to manage;  instances of depression rate highly, especially in the elderly and recently disabled.

Let's wear our Spartacus ribbons with pride and as a movement united in smashing prejudice, and continuing to prove that 'disabled' does not mean 'disenfranchised'.

As mental health campaigner Shaun Johnson said last night: 

" I missed the bit in the film 'Spartacus' where someone says "I'm more Spartacus than he is!" and then they all have a punch-up about who is the most Spartacus whilst the Romans carry on crucifying people...."

Dawn Willis


Farewell To Welfare - Grace Petrie

4/12/2012 12:19:00 pm BenefitScroungingScum 1 Comments


#PIP Survey - Please Help

4/11/2012 10:35:00 am BenefitScroungingScum 1 Comments

The wonderful Sam Barnett-Cormack and have designed this survey to help them put together an official Spartacus response to the PIP consultation.

We'd be REALLY grateful if you could spare a few minutes to take part. The more people that reply, the more reliable the results will be.

We don't feel that we should speak for you - but would love to base our response on what YOU think and need.

Thank you so much.



Disability News Round Up By John Pring - Week Ending 06/04/2012

4/10/2012 09:02:00 am BenefitScroungingScum 0 Comments

  • A new consultation on disability living allowance reform has added fuel to concerns that the government is ignoring the likely impact of the changes on disabled people’s lives, say campaigners.
  • The government has been heavily criticised for its decision not to accept the part of the UN disability convention that protects disabled immigrants.
  • The head of the equality watchdog, Trevor Phillips, is to leave his post after six years, it has been confirmed.
  • User-led groups across London are hoping to convince local authorities to continue funding two vital areas of support for disabled people and their organisations.
  • The mother of a teenager with autism who was repeatedly confined to a padded room at his residential special school has spoken of the “remarkable” progress he has made since a court ruled his treatment was unlawful.
  • New guidance could see older people, children, obese people and pregnant women receive protection under European laws on air travel for disabled people, a leading user-led organisation has warned. 
  • The MP leading a review of Labour’s special educational needs policy has suggested it will recommend a far more inclusive approach than the coalition government’s anti-inclusion stance.
  • Two disabled MPs have spoken out strongly against any moves towards legalising assisted suicide.
  • Two new high-profile campaigns are set to highlight the barriers that disabled people face when trying to use public transport.
  • Disabled activists have hailed as a major victory a decision by Scottish GPs to call on the government to abandon its controversial “fitness for work” tests.
  • Tackling the bureaucratic barriers faced by disabled people, a list of the top disability-friendly employers, and recruiting more disabled teachers, are just some of the suggestions for how the government can improve disabled people’s lives.

For links to the full stories, please visit Disability News Service


Spoonless Snippets

4/06/2012 01:58:00 pm BenefitScroungingScum 8 Comments

 First posted July 6th, 2010

My brain is stuck in a loop, snatches from songs long loved or unheard and unimportant for half my life spring to the foreground and whirl me back in time. As they spin in and out I seek them out on youtube, hoping to soothe my frazzled brain. Overwhelmed with pain and fatigue, unable to settle, flitting like a butterly brushing it's wings against memories held in time and place. 

"Slip inside the eye of your mind" to a time of smoking malboro reds and drinking black coffee. "Step outside cos summertime's in bloom" and suddenly I can't remember when I last did. Could it have been only yesterday? Yesterday a year ago? 

It's like listening to a poorly tuned radio swooping between stations. Memories appear from behind a cloud of static, lyrics dance around me. "I will sail my vessel til the river runs dry" under velvet black skies, filled with diamond bright stars and the humid scent of an East Coast summer. Laughing in the bed of a truck, huddled under blankets, miles from anywhere as we sung. 

The past waltzes from song to song against a constant background of pain. Touch upon it too closely and it provokes the neurological equivalent of screeching feedback through a PA system. "now the drugs don't work....I, I have become, comfortably numb" Southern French skies, the hot smell of dust and marijuana inhaled for the first time. Treasured tapes, more than six degrees of separation from their original. "Look mummy, there's an aeroplane up in the sky" 

"from then on it was turpentine and patches" spins me two decades ahead. The smell of skies leaden with rain from the open window tips me back. Sheets of rain on canvas roofs, a child's voice pure and perfectly pitched sings "I will remember you, will you remember me?" I do. Not her name, nor her face, but I remember the beauty of her voice haunting across darkened woods. 

The songs steer me safe. Away from the pain threatening to overwhelm. Close my eyes and the music dances me away, a selfish partner, whirling and swooping through streets shining softly amber as snow falls "If you think of me, if you miss me once in a while, then I'll return to you" not a promise but a threat "I'll find my way back to you." 

I'm 12 again. A gymnast, falling through the air. "time flies, doesn't seem a minute.." flat on my back on the hard gym floor. Unable to breathe or talk. For a moment which feels like a lifetime as time stretches and bends like my battered body against the unyeilding floor. "I can feel the devil walking next to me". I felt that devil with me for months to come, squirming endlessly on hard wooden seats in classrooms with windows too high to feel the air. Repetitive movements practised over and over. Even now, years after my body forgot, my brain remembers how and sends futile signals. Without the movement I spin off across the floor, still able to savour the natural high "Thou shalt not fall"

"Won't you help to sing? These songs of freedom.."