Tag Archives: solidarity

The Brain Fog

I think I’m the only disabled person I know who doesn’t refer to themselves as a Spoonie. It’s not that I have anything against the term, and I can understand why people do use it, it’s just that I never have. Probably because I’m too lazy to explain the concept to people, tending instead to say “I’m in constant pain and my body is working harder than most, both of which make me very tired”. Subtext – I’m not lazy, and I would love to have more energy, so please take your judgement elsewhere!

The term Spoonie hadn’t even come to my attention until I joined Twitter, and started speaking to other disabled and ill people about in less than fully functioning bodies. I’d always had contact with other EBers, but if we discussed our health at all, it was always specific to EB and it’s complications (blistered eyes, blocked oesophagus etc). By speaking to my Twitter pals, especially those linked to The Broken of Britain, I started to understand life with a disability more than I ever had before. And though I don’t call myself a Spoonie, one term took a figurative leap off of the screen and shouted “Yes! I actually exist!” – the Spoonie brain fog (search for #brainfog for evidence).

I don’t remember having the brain fog until the end of my first year at university, though I’m sure I had phases of it before that time (my brain has done a fine job of editing my long term memory into snapshots from the past twenty-four years). I know I’m lucky to have gone that long before it hit me properly, but when it did, it hit hard. My renown loquaciousness abandoned me the instant I tried to write essays, leaving me slumped over the keyboard and close to tears, struggling to recall the sentence I had formed in my head ten seconds ago. It didn’t occur to me that it was to do with the fatigue of living with a disability, and so I looked for causes for it; in the process I found a major hormone imbalance and was eventually diagnosed with long-term bipolar disorder, but the medications for each of those problems failed to clear the fuzziness in my head. So the sense of relief and belonging I felt when I saw that term, and that hash tag used amongst my Twitter friends, was almost palpable. It wasn’t a failure in concentration on my part, it wasn’t stupidity, or a willingness to let my perspicacity slide away from me, it was the result of living in a body that has to work its metaphorical socks off just to keep going every day. It sounds awfully self-pitying to explain all of the trappings associated with ones health problems or disability, and so more often than not, we don’t. People around us see the surface, but they don’t see the frantic paddling our bodies are doing beneath it. When you’re born with a disability or illness as I was, it isn’t any worse than developing one, it’s just maybe more difficult to understand what is usual and what isn’t, as there is no ‘life before’ to use as a point of reference. Though I wish none of my friends were ill or disabled, having their experiences to learn from has been a huge help to me.

After two short spells in hospital recently, I was checking my emails and realised that I had no idea what the ones from my The Broken of Britain cohorts were referring to, and yet I knew I should know. It’s a sign of how easy it to throw a brain that is surrounded by the Spoonie brain fog off course – two days away from my emails, and I might as well have been living in a cave for a year for all of the insight I had. But although it still frustrates me, and although I still haven’t really accepted that this feeling befuddlement isn’t going to leave if I shake my head hard enough, I feel much easier now I can email TBoB team back, as I did last week, and say “I’m out of the loop”. And they know exactly why that is, and they pull me straight back in.

NB: I wrote this after five false starts and lots of irritated tutting and cursing!


Filed under Disability, People Power

Mere seconds, major help!

Apologies for being slow to post this, but there is still time to help, so please read on!

It is now less than two weeks until the Government make their final decisions about “reforms” to Disability Living Allowance (DLA), which, if they proceed as planned, will have devastating effects on many disabled people throughout the UK, and on their loved ones and friends.

Being fortunate enough to have regular contact with people who are passionate about protecting the rights of the disabled (and the carers), particularly the wonderful writers and campaigners of The Broken of Britain, I’m surprised at how apathetic some disabled people are. I want to do more than I do, so I’m not painting myself as a paragon of virtue, but taking a few moments to sign a petition is the very least a person could do. Of course, those who physically cannot are exempt from that statement.

Sign the petition against cuts to DLA here

One misconception about disabled people is that we want the world handed to use on a plate, or that everyone owes us a favour. We really don’t (well, the vast majority of us don’t!), and we need to prove that. Okay, you might not have time to blog or protest, but please, do this. Make your voice heard and make a difference in less than two minutes. Think how you will feel if you find yourself without the benefit payments that enable you to live with your disability, and think of those who would dearly love to participate in this action but simply cannot.

And ask your friends and family, your carers and support workers, your medics and your colleagues to do the same, and ask them all to pass it on. Injustice does not change on its own, we have to fuel it. Don’t look back and think “I wonder if my help might have changed that decision”.

Carers, friends, families et al, you can all help too, and we would very much appreciate you doing so. These cuts could leave disabled people lying in their own defecate all night because their carer has been taken away, or bound to the four walls of their respite home room, because they can no longer fund an essential electric wheelchair. No one should have to live like that, nor should they have to risk starving or freezing to death, or feel suicidal through stress and fear, purely because of what their body and/or mind has done to them.

Thank you for reading this, and thank you in advance for helping the disabled people of the UK.

Mel xx

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Filed under Disability, People Power, Politics

Why is there such contempt for carers?

Last week, the tragic story of Riven Vincent’s lack of council support in caring for her daughter (read the story here) once again brought the plight of carers to the publics’ attention. The flurry of news stories, and the country-wide outcry, forced the council into acting; having said repeatedly that they couldn’t help Ms Vincent, they are now back to having meetings about what the Vincent family need, with the Prime Minister muttering hurried apologies. Ironic that a party who put such importance on family and marriage would have allowed a family to be torn apart for the sake of a budget…

Perhaps even sadder than the story itself is that by next week, the Vincent family will have been forgotten again, just as carers always are. Yes, they get the occasional pat on the back, maybe an award at a ceremony that is more about celebrities trying to look selfless than it is about supporting the nominees, and parents will be told that what they do for their child is amazing, but it is all lip service. Empty words to people who desperately need more than a piece of plastic or a round of applause.

This was emphasised on Tuesday, when I received Bromley Council‘s proposals for “changes” to disabled services in the borough, based around the introduction of ‘personal budgets’, allowing people to manage their own care needs. Unsurprisingly, the ‘changes’ are riddled with cuts and increased charges to the service users; the Council have proposed introducing charges for day care used by the frail, elderly and specialist service users (eg. dementia patients), which have increased from nil to up to £40 per session, and also propose implementing charges for service users who require ‘Homecare’ at evenings and weekends. Additionally, services users will be, if Bromley have their way, expected to pay for their ‘Carelink’ and other ‘assisted technology’ devices, plus many other forms of help, all out of their limited Direct Payment budgets.

I was granted Direct Payments in late 2008, after being alerted to them by an EB Nurse Specialist. My mother was working part-time (three days a week at Bromley Council, no less), whilst also providing all of my multi-faceted care, health and personal. Bromley Council decided that my needs came under the banner of “exceptional” and allowed me to pay my mum for the personal care she was giving me, as it would be too difficult to find someone else to provide the care to the same standard.

In early 2009, my mum gave up her job and went back to being my full-time carer, not that she ever really stopped; whilst my mum was working, she would get up at 6am, wash, dress, eat her breakfast, measure and administer my medicines and liquid feed via the tube in my stomach, prepare the things I needed to wash, adjust any slipped dressings, help me get dressed and leave with me a drink; during her lunch, she would arrange my prescriptions, equipment deliveries and any hospital/doctor’s appointments; after work (at 6pm), she would make dinner, sort out the washing, then embark upon my four hour dressing change, before measuring and administering my medicines again, and helping me into bed. Whilst she was at work, my grandparents would give me any help I needed. It was a great concern to all of us that Mum was under such a huge amount of pressure (my dad does as much as he can, but changing my dressings etc is hardly practical, and he works full time in manual work), and in March 2009, she took a year’s unpaid leave. After leaving work, I was granted the budget to pay my mum for some of the health care she gives me, and thus she left her Council job permanently.

Now at the age of twenty-four, I am only just being given the ability to hire another carer, in order to give my mum some incredibly well-deserved and desperately needed respite. Not that Mum will agree! Whenever I tell her how much I worry about her, she just says that she loves me and wouldn’t be anywhere else, and anyway, I’d do for it her (which, of course, I would). But that is exactly why and how Councils and the government abuse carers, and exploit the love carers have for the people they are caring for. I know that, despite caring for my faultlessly and with more dedication than any child or adult could wish for, my mum still feels having outside help with my care means that she is letting me down.

Most parents of able-bodied children complain about how draining it is, how they often feel bound by being a parent and have their freedom taken away, but for my mum, she is still is that position even though I, her youngest child, am an adult. I still need help with washing and dressing, I need to be cooked for and sometimes fed, I need to be put into bed (thanks to the copious amount of eye ointment needed to stop my corneas blistering at night), I often need to call her in the night for various reasons, and she still stays in hospital with me, camped out on the floor beside my bed. She is my nurse, my cleaner, my cook, my therapist, my grief counsellor, my personal shopper, my PA, and she is also one of my best friends. But Mum didn’t decline help from the Council throughout my life, she was just never offered it. And if she was, it was quickly withdrawn once the extent of my needs became apparent, as happened with the district nurses, for whom my care was impossible to fit into their already overstretched schedules.

My mum said recently that she doesn’t do her job, caring for me, because she loves it; she doesn’t love seeing me cry during dressing changes, or watching me go through one medical procedure after another, or helping me because my hands won’t function, or engaging in the indignity of helping me clean myself after I’ve been to the loo. She does it because she loves me, plain and simple.

Now Bromley Council tell me that they are proposing to cut the hourly rate paid for care, via Direct Payments, from £14.80 per hour to £11 (both minus tax). The proposal makes me absolutely furious, as it yet another example of how the work of carers is held in contempt. My mother works twenty-four hours a day, more than she is (we’re told) allowed to be paid for according to EU laws, and now they want her to work for even less. The fact is that my mum asks to be paid for caring for me purely to make ends meet. She’s not accumulating a nest egg, or jetting off on expensive holidays, but paying the bills and helping to put food on the table.

The Chief Executive of Bromley Council earns (as of September 2010) £188,785 per year – £46,000 more than the Prime Minister – and yet I doubt he works twenty four hours, is sleep deprived or camps out on hospital floors. Where is the justice?

It is this kind of treatment, and much worse, that leads carers to take drastic measures, whether asking for their child to be taken in to care, or taking theirs and their children’s lives. Every time those stories hit the news we shake our head, say “how terrible”, and hear hollow condolences from politicians, local and national.

Now is the time to tell them that we will no longer accept the debasement of carers and their work. The government is targeting the disabled and their carers because they see us as an easy target. How wrong they are!

This is a call to arms – we must protect our rights to have care, and the rights of those who provide it. Please tell your stories, whether you are the cared for or the carer. We can stop this injustice and degradation, but only if we all work together.

Thank you for reading once again. I’m going to hug my mum, say thank you, and then we will both carry on fighting.

Mel xx

To help support carers, please visit:

Carer Watch

The Broken of Britain

One Month Before Heartbreak

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Filed under Disability

Superb Supporters!

Since One Month Before Heartbreak posted the link to my blog, early on Sunday morning, I have been astounded by the huge amount of support people have shown. There already existed a great deal of solidarity within the disabled community, but the past two days have shown me that there is a lot of concern in the general public at the injustices being inflicted on disabled people.

Comments on the blog, Twitter and Facebook have all suggested that the government and the right-wing media aren’t hoodwinking people as effectively as they had hoped; our stories are being read, believed without accusations and scepticism, and are resulting in outrage at how disabled people are being treated. That is the way change happens, and that is how battles are won. As Benjamin Franklin rightly said…

“Justice will not be served until those who are unaffected are as outraged as those who are.”

To all of you who have read, commented, shared and supported my story and others, you are helping us on our journey to justice. You are helping those who do not have a voice to still be heard, and to be given the rights they deserve in life.

I cannot express how wonderful your support is, and how much it is appreciated. All I can do is thank you, from the bottom of my heart, and ask if you might continue to stand alongside us. The more voices that call out the same message, the harder it will be for the government to ignore it.

With much love and gratitude,

Mel xx

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