Bonds, Homes and Care for Profit: the Worth of Disabled People


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In light of Lord Freud’s so-called thinking aloud statement that some disabled people ‘aren’t worth the minimum wage’, it set me to think about how we – current society – assess the value of people.

First, some definitions from the OED, which is as good a place to start as any.

Worth – the level at which someone or something deserves to be valued or rated.

Value – the regard that something is held to deserve; the importance, worth, or usefulness of something; the material or monetary worth of something.

Pretty much interchangeable then, and there is that word ‘deserve’ rearing its pitiful head. Of late it seems disabled people exist on a precarious tight-rope of deserving or not deserving, and this state is a variable as those flying through the political ladder-climbing post of Minister for Disabled People.

Sometimes, if not all times, you are more worthy if you were in the military and are now disabled. There’s still an added hierarchy it seems; limb loss and spinal injury evoke more worth than mental distress and conditions such as PTSD. We now have the royalty sanctioned Invictus Games; the rather scant website ‘offers us highlights of an inspiring four days of sport, as well as a personal thank you message from Prince Harry.’

Deserving – and inspiring. Another indicator of worth?

I’m not attacking disabled people who have gained impairments through their military service, although the hypocrisy of successive governments through endless conflicts leaves me incredulous. It strikes me as a juggling act by politicians of seeming to have a conscience and making an effort towards social justice.

“All animals are equal. But some animals are more equal than others.” A quote from Orwell’s Animal Farm, published in 1948; a parable of socialist ideas perverted into the Stalinist tyranny. It seems apt to say some disabled people are deemed more equal than others. And, is equality the same as worth? They are inevitably linked, because human beings should be ‘worth’ the same in the sense of striving for equality for all.

There’s a lot of talk about downwards slippery slopes for disabled people, and I suspect one is that which sees our ‘worth’ as being a method to further the bank balances of private care-home owners.

It’s bizarre. Many of us may be deemed of no economic worth and yet, here we may have use – a circle of money, passing through us. Without touching the sides. Without actually valuing us other than assigning us as ‘products’, which can be used to syphon money from the state (mostly) and forward it to company owners and those who have shares in these care industry bodies. Reading market analysis of the care home market such as this, is enough to bring on a depression, wading through terminology of bonds and transactional yields. Irony is, apart from foreign investors looking to scoop up these institutions, it seems profits are down…

Let’s reach for a higher level. The United Nations Universal Declaration of Human Rights.

  • “…recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family is the foundation of freedom, justice and peace in the world…”

The UDHR was drawn up in 1948 after the abominations of world war. I’m not sure we’ve progressed very far with this ideal, but for disabled people the rights towards equality we’ve fought for, are in danger of serious erosion.

The Convention on Rights for Persons with Disabilities, under pins the UDHR and adds more:

  • “…Recognizing the valued existing and potential contributions made by persons with disabilities to the overall well-being and diversity of their communities, and that the promotion of the full enjoyment by persons with disabilities of their human rights and fundamental freedoms and of full participation by persons with disabilities will result in their enhanced sense of belonging and in significant advances in the human, social and economic development of society and the eradication of poverty…

The language may be a little cranky and clumsy to our ears but it is important. We at least have ‘valued’ in there and it places us within a context of human beings that experience discrimination. Governments should take note. We are not the passive recipients of hand-outs that we once were. Indeed, article 19 of the CRPD may be helpful to the arguments to stop the closure of the Independent Living Fund.

November to December was UK Disability History Month – but let’s look beyond it to remember who we are, what we have done, what we might do – and that value and worth should never be interpreted in the coldest terms of monetary balance alone. That is to judge us by the worst aspects of capitalism unbridled.

And I wonder when those of us not protected inside the wealthy echelons of the few, will be told their dogs and cats et al are unreasonable extravagancies of no worth…


Don’t Bother Me with God.


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Feeling a touch grumpy with Xmas, when on FB especially, a lot of hypocritical psuedo-christian nonsense is thrown up by people with no religious practice whatsoever at any other time. Even in an excuse to be ‘British’/’English’ – whatever the fuck that means in the end – and the ‘right’ to have xmas.

I am not a christian. I hate all religious extremism, though I am not what I would call an atheist. I celebrate the midwinter festival in a secular way and to note the Solstice which pins the shortest day of the year to the calendar as an astrological phenomenon.

By all means have a religion. But don’t get all sanctimonious at xmas and put it in my direction. Keep it private and quiet, please.

And I hate to break this to you, but Jesus  was not by any stretch English (Anglo-Saxon) or British (‘Celtic’). (Bracing myself for hate posts…) I think that’s a well-supported fact. If we accept the evidence for him as a religious figure he was Jewish and lived in the Middle East. You know, a foreigner.

Let’s enjoy the midwinter moments together with loved ones. I like that we have this focus in the dark to reflect and look forward. The days will open up now, the gloom will turn away.

But keep God out of it – and be happy that the light really is returning. Slowly.

Crippled Scrounger Leaves Used Sex Toy in Christmas Harrods


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I thought I’d play with headlines today. It seems that a hint of scandal helps your blog go viral.

And maybe it’s true, my headline.

But as we hurtle into the festive splurge I find the government is on my mind. Or should I say politicians.  I didn’t watch the BBC’s Question Time with Brand and Farage because it would have brought on my angina.

I believe Russell means well. He also sat on my ex-husband’s lap recently. Now, that IS true. It was at a protest and I believe he was having a lark.

But aren’t we all sick of this biggest of pantomimes? And an increasingly nasty one, veering into right-wing slogan politics, replete with villians twirling their non-British bushy moustaches – Romanian non doubt – while making perfect sandwiches with the oh so violent Hungarians. And let’s not get onto beards. Beards: the terror of our nation. You should live near me in central London. Facial hairy-scary in hipster HQ Shoreditch.

Then there’s us, the sly-eyed peg-legged Tiny Tims, the melodramatic wailing loonies; the fake beggars all, sucking the state for hand-outs.

As for the left-wing – what left-wing? I realise that its scant presence in the media is precisely because the media is mostly Murdoch-driven right-wing, but also there seems to be a fear – an embarrassment – about being a socialist these days. When once it was a source of pride, as was living in a council house. Ed Milliband is plainly uncomfortable with being a socialist as he flaps around for policies to lure the electorate.

I wish all politicians would shit out their hypocrisies and let us behold the steaming turds of truth.  Tell us (more) of what they really think –  a la Lord Freud. I’ve been told the country cannot afford to assist me (and thousands) to work and live as an equal human being over many years, including though not exclusively, via The Guardian comments, when I write for Comment is Free.

So. Some people are not as equal as others. What next then? The whole picture is rarely looked at. We seem to enjoy living in bubbles, and certainly the privileged political classes revel in this. I’m all right Jack n Jill mentality. It’s OK to be disabled if you have money. Money removes many barriers; it pays for the reasonable adjustment enshrined in shiny gold the Equalities Act.  You can pay for your disabled child to go to better schools, have the best support, and even pay to bypass inaccessible environments to some extent.

Oh money. There is enough to go around. I am quite sure of it. Look at the Champagne Situation. Poor Lords, cheap nasty bubbly foisted on the dears. Tax payers cough up! Never mind granny in the  underfunded care-home sitting in piss, give our betters some posh drinkies. Don’t dare to tell me this is different. That the funding stream is not the same. Make it the same fuckers. Get a grip.

From Poor Lords to Poor Law. It’s been around for awhile, this idea of the deserving and undeserving. The Victorians loved this notion, as much as the men enjoyed the services of the massive population of prostitutes. But earlier still, 1388 to be precise we had this:

In 1388, the Statute of Cambridge (12 Rich.II c.7) introduced regulations restricting the movements of all labourers and beggars. Each county “Hundred” became responsible for relieving its own “impotent poor” — those who, because of age or infirmity, were incapable of work… Following this Act, beggars could pretend neither to be labourers (who needed permission to wander), nor to be invalids (who were also forbidden to wander). The 1388 Act is often regarded as the first English poor law.

There we have it. Restricting the poor and those pesky invalids. Nothing new under the sun.

And it remains; these days anyone outside those gilded echelons is a target – as a scrounger, as the underserving poor, the disabled poor, the working poor. The reality is more fluid and surprising, if anyone in government dares to step outside stereotyping, look at history, read a good book or two. We connect, over-lap. We are within the body of humanity. We are humanity-get over it.

I was going to look at the hypocrisy around the support given to disabled children – and premature babies even – for them to be discarded into an increasingly fascistic society as adults. Services undermined, closure of Independent Living Fund, attacks on social care, mental health services and funding that supports employment.

Another day, another year. Damn – 2015 – Election year. I’ll hibernate.

Oh well, perhaps, meanwhile, I can sell my sex toy story to the tabloids?

Scandal one: disabled woman has sex toy.

Scandal two: she’s in Harrods.

Scandal three: she can afford to be in Harrods.

Scandal four: Story is mostly fabricated.


Season’s goodwill to you all. Enjoy the midwinter partying. The light returns – and I hope that it will be in more ways than one.

Dadafest 2014 Blog 1: Scripts, Surprises and the Nuisance of Pain.


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It comes to my attention that family and some friends have a rather sweet notion that I lead a ‘glamorous’ life.

One minute I’m a sudden guest on Newsnight due to the Lord Freud debacle then, previewing Lost in Spaces at Soho Theatre, with its old insalubrious reputation bestowing a glint of the naughty, then off to The Royal Festival Hall to be naughty in Criptease – and now, look at me, the show-off. I am soon to Liverpool to the mighty DadaFest International 2014 to give my show a second airing – a fitting conclusion to nine months of intense development before the show tours in 2015.

I don’t wish to ruin their romantic notions of my life, but the reality is that for all those moments of glorious achievement, there are endless days of hard work – and the irritations of juggling different and complex impairments.

I’ll say it and be damned. Yes, there is pain too, a gnawing goblin in my bones. I hate it and always will. It gets in my way.  No, I don’t think life isn’t worth living, no I don’t want to go to Dignitas, and no, I do not support the Dignity in Dying Bill.

Because, amongst many other pleasures, there are the words. Mine.

Oh, words words words words words words words words words.

Words. Into forms. Into stories. My passion. If I don’t indulge this passion I retreat into myself and dissolve into a mute weepy puddle. Excuse the self-indulgent moment.

It’s all about that; and I am alert as I can be with Bethany, my director and project manager, as we make lists for travel, ensuring a stress-limiting journey to Liverpool, booking train assistance and streamlining props. You know what? It’s exciting!

After a quick lunch it’s time to revisitLIS hat the Lost in Spaces script.

I’m happy with the poems that feature in the show but want to tighten the structure. There’s a flow between the portrayal of stages in my life, coloured with music, photos and diary entries that must keep its focus. The visual must be supported with the spoken, and linking my life to the universal is key.

I do have a surprise for my Dadafest performance, a secret revealed only for the audience in Liverpool. If I tell you, I’d have to kill you, obviously.


So, watch my spaces!

Remembrance Sunday: the Crocodile Tears and Soft Hypocrisy of the Elite


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The Remembrance Sunday spectacle makes me gloomy. I will not make throw-away statements about it all being pointless etc. It needs more unravelling than that.

I am sad for the common people; my own ancestors who took part, others who were ‘conchies’ and played important roles in their millions. Ordinary people – my Dad was an evacuated war baby and later a Marine Reserve… And yet?

So much is for show, enshrining the rich, the privileged, reinforcing their status for us to ‘look up’ to, to underline a social order, that as a method of control seems very much to have the upper hand, because we instinctively want to remember and respect our dead.

Yet how many disabled service people get the support that need – long term? How about the elderly? Widows? I know these people are not supported well and I also know that the largely right-wing press does not cover the scandal as much as it should.

The writer in me cannot but help look at the stories beyond, to the individuals. And see links to the ongoing attacks on anyone outside the rich elite – unless it suits them in terms on flattering their own egos and guilt.

Therefore I am sad for all those deaths in war – perhaps some unavoidable with the fight agains Nazism/Fascism and its ilk – but I am also distressed that the hypocrisy and even cruelty, of our ‘leaders’ is so rarely acknowledged.

No, today is all about honour and bravery and respect, but blighted with the hideous crocodile tears of those is authority.

Death, Life and Wretched Words of Tragedy: today’s return of the Falconer Assisted Dying Bill


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I’ll start with some emotive words. Pain. Suffering. Tragedy. Incurable. I’ve had them flung at me since childhood. Sometimes well-intentioned in an effort at empathy but mostly from a lazy perspective of no effort to enter into my world, my actual world.

It seems there’s a lot of perplexity out there regarding any understanding of disabled people – and with the return to the Lords today of the Falconer Assisted Dying Bill, you can be sure of much hard copy extolling how many of us yearn for a peaceful death, aided by saintly doctors. There will be the usual muddle about terminal illness and the severely disabled, not helped by the supporters of AS who often have poster-people who are not terminally ill.

Ah, the Assisted Dying Bill. Surely it’s about common sense and compassion, after all, and putting in place relevant protections. We don’t let animals suffer, do we? And we all want that lovely easy passage of medical help to ‘pass on’?

No, I do not. My friends and colleagues do not. We say no to state-sanctioned death and refute the idea that this is a simple issue.

And so it begins again, the dripping sadness and distress and awful tragedy. Let’s throw in dependence. There is a growing belief that if we suffer, have pain, are dependent and, yes, are deemed tragic, then it is surely understandable – inevitable even – that we want help to die – terminally ill or not.

This debate is so often about fears of dependency, loss of autonomy, and horror about becoming a burden. Recently in the news is the case of Australian Martin Burgess, who took his own life three years after a diagnosis of cancer. A friend reported that “the idea of becoming dependent on someone or going into palliative care was ‘abhorrent’ to him.”

The Falconer Bill purports to be based on Oregon’s Death with Dignity Act. Ironically the statistics arising from this law show some salutary truths about why people chose assisted suicide, and also some scary facts about people out-living their terminal prognoses. As this report by Dr Peter Saunders shows, it’s not pain (or fear of it) that’s the key reason people decide to do it, but, “in 2013 93% cited ‘loss of autonomy’, 89% said they were ‘less able to engage in activities making life enjoyable’ and 73% listed ‘loss of dignity’.”

Not sure where that leaves me; dependent on others since my twenties – and in pain every day. Activities? I engage in them as much as I ever have – dependent on the level of social care and the barriers within society that I may face; factors that have solutions with the right will and funding.

I want to weep. If you’re on the fence, please look at the evidence, wake up and smell the dreaded deathly cocktail. We know Lord Freud thinks some disabled people are not worth the minimum wage – I went on Newsnight to declare my anger and alarm at those opinions. The government generally, and their media lackeys, are labelling thousands of innocent disabled people scroungers – or claiming we are too expensive to support. This is evidenced by the grossly unfair closure of the Independent living Fund, the chaotic replacing of Disability Living Allowance to Personal Independence Payments and highly underfunded palliative care. How convenient then, that we can be subtly coaxed towards a state-sanctioned death, which is better for everyone.

What is left for me to say? Immersed in medical care for much of my life and extremely familiar with pain, this issue is personal – but I am not anti-suicide or anti-choice (see my Guardian piece). I know I am a compassionate person and that is why I am against this bill. I fear it will be a charter for hurried death, a slope towards sly murder where, believe me, family and medical coercion can never be 100% safe-guarded against.

Moreover, it will inevitably become a duplicitous weapon in the undermining of the worth of those disabled people – of all impairments, medical conditions and illnesses – who dare to want to live, to contribute and to flourish for however long they have.

Freud and the Phoney Hypocrites in Power

And on we go. Have to reblog. This debate cannot go underground.

Telling the Story: Penny Pepper

A grey afternoon and on goes the Mac. I’m confronted with the face of Lord Freud, and quite as bad, the face of Esther McVey.

Along with the crazy tweetosphere, which sees him trend on #, a BBC report shows Freud was  “thinking aloud” it seems, caught out agreeing with a claim that some disabled people  “aren’t worth paying the minimum wage”. Other choice comments and misconceptions spew forth from this starting point.

I’m back from a pleasant lunch with a friend at a charming little cafe in Islington, spending a few quid of my tax credits (no £43 IDS type meals for moi). Freud and his ilk won’t ruin my good mood after this, but they sure as hell have refreshed my annoyance with the rampant hypocrisy of this government – and beyond it.

Labour seem cynical in seizing this opportunity to show up Lord Dodgy Freud for a cheap advantage when their…

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Freud and the Phoney Hypocrites in Power


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A grey afternoon and on goes the Mac. I’m confronted with the face of Lord Freud, and quite as bad, the face of Esther McVey.

Along with the crazy tweetosphere, which sees him trend on #, a BBC report shows Freud was  “thinking aloud” it seems, caught out agreeing with a claim that some disabled people  “aren’t worth paying the minimum wage”. Other choice comments and misconceptions spew forth from this starting point.

I’m back from a pleasant lunch with a friend at a charming little cafe in Islington, spending a few quid of my tax credits (no £43 IDS type meals for moi). Freud and his ilk won’t ruin my good mood after this, but they sure as hell have refreshed my annoyance with the rampant hypocrisy of this government – and beyond it.

Labour seem cynical in seizing this opportunity to show up Lord Dodgy Freud for a cheap advantage when their own support of disabled people’s rights has been insipid to say the least. Clear message on saving ILF anyone at Labour HQ?

The BBC’s political editor Nick Robinson suggests Freud was “thinking aloud”. Are we meant to feel OK about it then?

I am not so much thinking aloud, as laughing aloud. In a hollow, weary, what the fuck? chortle.  The comments about jobs in general, and the one about ‘self-esteem – oh dear. My self-esteem doesn’t hinge on having some crappy job that isn’t fit for purpose of a human being that pays me £2ph. It blossoms with knowing I have value as a human being; as a citizen who is here now, in this current society, existing within a family, a community that supports me and what I bring to it. Dream on eh?

At PMQ, head toff Davy C, told faded Red Ed he “did not need lectures from anybody about looking after disabled people”.  I’m laughing loud now in between wincing. This statement says it all. As ever, our destiny is to be looked after. Not given rights. Not genuine support to work when we can and rights to receive sufficient social care when we can’t – without labels and judgements on our ‘worth.’ We are those that are LOOKED AFTER.

Oh and there’s Esther. I thought she’d slithered up the slimy Tory ladder away from moaning cripples and their irritating special needs. She did tell my mum we, (disabled people) like care homes, mind you, in relation to the closure of ILF. I have the letter…

She’s absolutely the best person to speak out against naughty boy Freud: ‘disability affairs’ minister? That’s a new one.

Look, I could write blogs on disability affairs all right. Yes, I’ve had a few, but it’s not the right time for my own Belle du Jour revelations. Not yet.

And my last thought – one thing these rich self-serving idiots never remember is that they aren’t as cosy and protected as they think they are. There’s a lot of us once you look down from your ultra-rich security blanket.

Some of us have a genuine social conscience. Some of are disabled.

Many of us are watching and listening.

And waiting to bring you down.

Party Political Conference Puffed Up Parties: Wake up citizens and smell the stink!


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Please keep up pressure on the hideous Tory Party Conference with tweets and shares. Many tweet ideas are here at DPAC:

The Tory policies affect everyone out side of the rich privileged bracket. Please, please think beyond the right wing media, encourage others to think. Not to dictate but to be aware! I am weary of these fuckers. Lets boot them and the oily self-serving liars of UKIP out out out into the

If you use our NHS at any time – if you assume it is there for you when you need it, or your loved ones need it – act now. If you have children that you want to see thrive and achieve no matter their class or future economic ‘worth’, then act now. If you have elderly parents who need social care – care that is appropriate and well funded by the state – act now.

If you, or those close to you have experienced hardship, redundancy, homelessness, abuse and came through with support of the state, fight some more to keep what WE – average citizens doing our best – know is precious. Our predecessors fought for what we have in endless tiny and magnificent ways – let’s keep up the fight to retain – and even better – our NHS, our social housing, social care, equality in education, fair working practices and beyond.

And let’s protest to stop poverty and disability being linked in a blanket fashion to ideas of moral weakness, of criminality and personal laxity – while huge companies dodge paying tax and ministers spend our money on dubious expenses and underwear.

We have to talk, to question, to discuss. Not rant and rave ideology like these greedy goons in power and those of their ilk, but openly, to share ideas and see that there are alternatives to this closed small-minded liberalism of the greedy rich.

We can stop this. We really can – together. And I must end with the verse from the poet Shelley in response to an earlier government atrocity, still powerful and still relevant:

Rise, like lions after slumber
In unvanquishable number!
Shake your chains to earth like dew
Which in sleep had fallen on you:
We are many—they are few!

(From The Mask of Anarchy by Percy Shelley)

Lost in Spaces: Harold Pinter and the happy slog of rehearsals.


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For the last few weeks I’ve been closer to home in the Harold Pinter Studio at Hackney Empire for rehearsals of Lost in Spaces. Mare Street, where the Empire is situated, is a vibrant and diverse place in Hackney, East London. From the studio’s large windows, I can look down towards Hackney Town Hall. Once, I was a Rhinestone Roller down there in the square.

Bethany, my director, takes me through some vocal exercises and one in particular really strikes a chord, to use a vocal pun. Vowel sounds, over-emphasised, making exaggerated shapes with your lips and mouth. Next, you go through the alphabet, adding a consonant, starting with B. BAY BEE BI BO BOO. And on through to Z. I change my tone and my speed. I slide up and down a scale. My throat feels a little tight to begin with but I know it is building up strength.

This week we do the first complete run through of Lost in Spaces – albeit with stops and starts and as yet no real props. There are three sections to the piece, allowing me to ‘rest’ for 3-5 minutes off stage, during transitions that will most probably feature tracks from my 90s LP, “Spiral Sky”, with a photomontage. Oh what heady days, and all the hits that never were… We will see!

Next time, off to Rich Mix for rehearsals. And mustn’t forget to mention a chance to do a tiny preview of the show at Daisy Fest in Guildford on June 4th. Hope to see lots of you there! 

As time passes with all this work and development on Lost in Spaces, I’m excited as much as I’m nervous.