It's no wonder politicians are ignorant about the trials facing the disabled traveller

Thanks to the Guardian's Joe Public blog for publishing the second part of my 'ability to mobilise' trip to London here

I'm Sorry, I Can't

Originally posted 07/07/2010 

Reposted today as I don't have enough spoons to make it to Naidex, an event I've been looking forward to for 6+ months. In the past 7 days I've also had to say I can't make it to a celebratory night out, my neice's second birthday and the lovely Hardeep Singh Kohli's show.



I'm sorry, I can't. Even typing the words catches in my throat. Or fingers, as my throat can't actually type. Whatever. I think those four small, seemingly innocuous words are the hardest of all to say, and every time I have to utter them a tiny part of me bleeds inside. Practised in the dark arts of loss, I momentarily acknowledge the pain, that it is in fact all a bit shit, before turning my back firmly and focusing on how good I have things. 


I'm still free of Oxycontin and it's still slowly improving. I feel better than I have done in months, more alert and more interested in doing things. At times the pain is utterly overwhelming but it's a natural pain, not a drug induced one. I'm managing to do 15 minutes of stretching and physio most days, using the episode of Postman Pat BBC2 helpfully show every morning to distract me from how boring it is. Some days I'm also managing a death walk, some days not. I'm generally managing to read more of the things I'm interested in during the day, to have friends come round for a coffee and to eat a few times a day. Oh, and stay out of bed til around 9pm most evenings. These are all very good things and getting done far more consistently than they have been since the whole Oxycontin withdrawal started, but at the same time they aren't exactly the most exciting or energetic of things and they're draining every last spoon I have. 


I'm tired of having to make excuses to my friends about not being able to come to whatever it is they've invited me too. Tired of feeling guilty about not being able to do things, even though none of my friends ever make me feel that way. I'm so excited about actually feeling more awake, more able to get through each day that fortunately that far outweighs the times I feel this sadness and guilt. Disability is so intimately connected with loss and benefit that it's easy to forget sometimes the small cuts hurt the most and need their own time to heal. 


Today was a deathwalk day. It went pretty damn well actually. There's quite a few of us who deathwalk down by the beach, linked by an intangible, intimate understanding of each other, whilst remaining nameless strangers. One remarked upon how well I'm doing, that just a few weeks back I was literally dancing on the spot as I tried to progress. I balance with my arms as I become more fatigued and with music in my ears it can feel as well as look like a dance. There were kites being flown, the air was clear and fresh and the world looked beautiful. Working so hard at movement can produce the kind of euphoria any sportsperson will recognise, a simple joy of being. 


And, whilst I again had to say 'I'm sorry, I can't' to one thing, I have been able to say 'yes, I'd love to' to another.

Incapacity Benefit / Employment Support Allowance / WCA - useful links

Who's Cheating Who? BBC Scotland investigate Employment Support Allowance and the Work Capability Assesment. Danny Alexander MP claims vulnerable people are being refused benefits they are entitled to

Osborne's haste will undermine Incapacity Benefit reform

75% of claimants are NOT being found fit for work

Terminally ill man told to go back to work

800 000 Incapacity Benefit claimants face losing their benefit

Why Osborne's benefit crackdown won't just hit the workshy

Gizza Job, Go On, Gizza

Someday, Somehow, Someway

Revenge Of The Bendy Baked Bean Boob Gods..

Apparently blogging about good days angered the bendy baked bean boob gods who held off until Friday evening (25th March) when they blew back in with a torrent of revenge. No...not that kind of blew in, frankly that would have been a much pleasanter option altogether.

It must've been around 7pm when things started to go a bit wrong. Trufflethebendy and I were chatting on skype, which for us does tend to consist of a great deal of hilarious mocking each other for the freakish appearance dislocations one of us has spotted in the other. I was particularly floppy and hypotonic that evening, so my stomach was painfully distended. In one of those moments which seem truly inspired until disaster strikes we decided I should have a feel below my sternum to find out exactly what was causing the bulging.

So I did. Have a feel that is. Very carefully pressing with two fingers into what would usually be a bulging diaphragm for which I have been taught the safe technique to release. Except this time the muscles didn't tense and then ease off as I was expecting to feel, instead I felt my entire stomach lurch backwards and trigger the immediate spasm of everything in the area.

At which point I released I couldn't breathe. Or talk. Or do anything much except cough and choke. And cough and choke and cough and choke. And go a bit blue. Poor Truffle was watching helplessly via skype, as I disappeared in and out of the frame coughing and choking.

The initial spasm lasted for about two and a half minutes and when it eased off I still couldn't talk as my larynx, thyroid and crycothyroid had all dislocated. In addition to which, as I tried to breathe in I could feel my entire oesophegus and trachea collapse into themselves, like a pinched drinking straw. Having experienced this before I know the absolute worst thing to do is to give into the panic. That worsens the spasms and always ends in a one way ticket to A&E.

Fortunately, although I couldn't talk, I could type enough to manage to communicate that I knew what was happening. Apparently by the time I agreed it might be a good idea to get someone round to sit with me I had been spasming for around 40 minutes, although to me it only seemed a few to me. I managed to text my neighbour 'can you come round' and then realised that the door was locked, she didn't have a key and I hadn't sorted out my key safe. The spasms were easing off enough so that I could make it to the door, but slowly while both Truffle fretted that she couldn't see me and Cat worried that she couldn't get in and didn't know what kind of trouble I was in.

Truffle stayed on skype so she could explain what was happening as I still couldn't talk properly and was coughing and spasming, although the time of the spasms was shortening so I was hopeful the worst had passed.

It's all a bit blurry and hazy for me in retrospect, I remember Truffle talking and giving instructions about medication and what to do if things got worse and that although we both remained completely calm how absolutely terrifying it was...and how much I *really* didn't want to have to go to A&E on a friday night...typical!

The spasms gradually eased and I was able to swallow some diazpam. Cat stayed with me until I was ready for bed having made sure I'd managed to safely swallow food as well as liquids.

The following day I was utterly spoonless and trying not to worry about the continuing spasms and trip to London on the monday. Fortunately resting and being looked after by friends and neighbours worked and I was much improved the next day and made it to London on the Monday with breathing and voice intact. A week on I can still feel how threateningly floppy it all is, and every so often my throat falls in on itself or trachea pinches shut but no more major spasms. Which is a relief for all concerned - as is the fact my key safe is now securely in place!

Lesson learned - never leave two BendyGirl's alone with a camera and fingers to poke with. Ahem.


Look out for a companion blog to this written from Truffle's persepctive

The Power Of Belief And Wishful Thinking

Guest post from Hossylass

I personally am furious about the Government reducing, or rather bastardising, the social model.
They claim in the Disability Living Allowance reform that the world has moved on since its inception, and is a very different place from what it was when they constructed the DLA. And hence DLA needs reforming.

Yeah, we had the DEA and DED’s. Powers that are only effective when wielded as a weapon of defence by disabled people. Now that has changed to the Equality Act 2010, but until the change is proved to be working then it is just wishful thinking, and they cannot rely on the world of wishful thinking. Not when that reliance is at the expense of disability benefit reductions.

Wishful thinking and the necessary retrospective actions are  just some of the flaws in the Governments interpretation of the social model.  Given the reductions in Employment Law for small companies, the legislation promoted as the great social equaliser becomes not just a toothless beast, but a totally vacuous promise.

However the social model was never meant to be used in isolation. It is an academic tool to be used alongside other models, to be used as a framework for reference when discussing all aspects of disability. The use in isolation, and subsequent bastardisation, of the social model has left some disabled people in a very vulnerable position.

The social model is not a valid model for people who are sick, and disabled by illness. It leans towards those who are disabled without illness or pain, i.e. it leans towards those whom society generally recognises as disabled. It then leads automatically to the ESA and the whole “working” thing which is portrayed as a good thing, and I agree, because if the world was flat, and wheelchairs were wonderful and free, and all transport accessible, and all people could sign, and hearing loops existed in every cable in the land etc, etc, etc (fill in your own wish list) then disabled people would have a better chance of being equal regarding many aspects that disable them.

It is only a better chance, but the equality of access and communication will only be effective when the wishful thinking is fulfilled. It won’t be achieved by current legislation. It won’t be achieved by Dave’s “Big Society” either, because if society was such a nice obliging disability-friendly place then there would be no need for legislation.

However, even if this utopian idyll existed it would do very little for those who are simply too ill to participate, a point that gets ignored constantly.

Those who have chronic illnesses and disabling conditions often look totally free of disability. You can pass them in the street and not feel the urge to stare, pat their guide-dog or lust after their wheelchair, because you haven’t noticed that they are disabled. This is because people with chronic illnesses and disabling conditions have a tendency to stay at home, indoors, and usually in bed when they are disabled by their illness. Some are hospitalised when their illness becomes noticeable. At this point the social model, as portrayed by the Government, becomes irrelevant. All that matters is the medical aspects, the treatment, and the vague belief that “some day soon” the condition will go into some form of remission. Their lives are controlled by the random fluctuations in their conditions. 

The medical aspects of life are what controls the behaviours and choices these people make – “Can I cope with a crowd today?”, “Will I have enough stamina to get me to the shop and back?”. When they do go out in society it is often dictated primarily by the medical aspects of their condition.

The reform of DLA and the horrific ESA are both heavily influenced by three significant beliefs;
The belief that society will somehow become accessible, and therefore remove all barriers disabled people face, the belief that all people will get better from debilitating conditions, and the belief that sufficient financial sanctions and enforced work participation will in some way bring about the first two scenarios.

Well society won’t become instantly accessible just because DLA has been reformed, and people won’t recover from genetic life-long conditions regardless of how many times they are tested. If we don’t remind people that the medical model is as relevant as the social model, and that these reforms and cuts are based on projections, unfounded beliefs and wishful thinking, then a significant proportion of the disabled community will, in the not too distant future, get seriously shafted.

And no amount of belief or wishful thinking is going to change that.

Guest post by HossyLass, originally posted here