Margaret and Me: reflections from my Thatcher years

The Thatcher funeral pontificates in the background as I write. I feel a weary resignation to a day of eulogy, of history revised, though if nothing else, this event provokes me to be reflective on my own past.

I was in my late teens when Thatcher came to power. I remember those years with an emotional resonance, the deja vu feeling that comes with recalling tough times.

I had a passing interest that she was a woman. I was new to feminism and embraced it into my strange, sheltered life as I devoured books by Germaine Greer, Simon De Beauvoir and Marge Peircy.  Let us not forget this quote from Thatcher:

For I hate feminism. It is poison.

I look up. A black woman reverend speaks at MT’s funeral service…

I was never politically sophisticated. I’m an idealist, a soft socialist with neo-anarchist leanings. I was a member of CND back then and to quote from an hilarious song I wrote at that time about the idea we all had 4 tons of weapons grade plutonium or some such:

‘No Mon amour, mon amour Cruise Missile

Take away my four tons

They deal in death

I don’t want it’

I was a punk, after all, I was and remain, working class. The very marrow of my being rebelled instinctively against Thatcherism; with responses of teenage moral outrage, rather than one from a party political perspective. All parties seemed full of dull old men and had nothing to say to me at 19, a young disabled woman.

My realisation was swift; my family, my friends and myself were under attack from Thatcher’s preaching of small-minded, self-interested individualism. I lived in the south, in Green Belt country – on several sprawling council estates that were always built away from the posh people, like an embarrassment that had to be dealt with. There were knife fights, stray dogs, mattresses in the road, a chronic, scabby, rural-tinged poverty. Thatcher did not give us hope.

There’s singing in St Pauls. I Google: Thatcher and disability. Thatcher and the welfare state.  Thatcherism and the NHS. The responses are scattered; academics and political journos can enjoy scratching through that if they wish. What strikes me is that Thatcher not only perpetuated the Charity model of disability – in which we are the dependent and helpless individual – she also spread some rotten little spores that brought the weeds of rampant capitalism large and thriving into our lives today. It was all about perfect family values and voluntary practice, market forces, the non-society; an ideology that undercut universal health and social care.

If disabled people are mentioned it was usually as an afterthought. I did find this little nugget from some event about the launch of a ‘voluntary’ Code of Good Practice for the employment of disabled people. Charity and Triumph Over Tragedy models rule:

I believe that most of us get a special satisfaction from helping them [disabled people] to find new hope and a new sense of achievement. We have so little to complain about, and so much to learn from them. We are grateful for their example. http://www.margaretthatcher.org/document/105788

So now we know. We made Maggie feel better and grateful.

I remember those miserable employment schemes with a tired anger. I was put on them and they failed because there was never an attempt to change the outside wrongs; the inaccessible environments, the lack of accessible transport and no personal care support to do anything. Let us not forget; Thatcher did not support any civil rights based anti-discrimination law for disabled people, and the weak, medical-model scrag that is the Disability Discrimination Act scraped through as a begrudging apology – and around 10 years behind other anti-discrimination law.

I lived a bizarre half-life in those Thatcher days, as did many disabled people. No Independent Living, no Personal (care) Assistants. No accessible buses. No access to buildings. Scant information, accessible or otherwise. No sense of belonging in society. In those days we really were hidden; within struggling families, within care homes. A pre-social media age; no mobiles, no computers. I had no social life and few friends; we communicated by post – hand-written letters – and used a landline telephone thriftily. I do remember the fear that ripped through communities – yes, even in my soft southern council estate enclave – as jobs went. And went. I remember putting money in buckets collecting for miners’ families and the Greenham Common women. My clothes from jumble sales and Mum buying cheap stale bread as the shops closed is another memory burnt into me from those times.

It was after a four-year battle with social services, and some advice from Ken Livingstone (yes, Red Ken) that I managed to move to London with a best friend to live in a tiny flat in Leyton. This coincided with the first nervous beginnings of disability activism and our arts movement. We were fiery and committed. Maggie was certainly not going to be an ally to our liberation. She believed in ‘helping’, not empowering, not ensuring our equality. But then, she didn’t seem to believe in that for anyone.

We fought tooth and nail. Soon we had Direct Action Network. Artsline, the Disability Arts Forums and BCODP, to name a few. We fought and achieved, evolved and grew, each in our own way clawing a new little freedom that disabled people have since enjoyed.

I’m struck that some of my gloomy reminiscing rings with a frightening familiarity. No surprise; Thatcher was a key progenitor of the capitalist ideology held by Cameron and his cronies. Blair was a successor and a worthy one, as MT herself once remarked. The snake in faux red with pants of pale blue.

I look up as the funeral drones on and see Boris with his deranged hair. Jeremy Clarkson. Shirley Bassey.

I pause to think about more recent times. How disabled people are under attack as scroungers, fraudsters, responsible for the recession. Victims of increased hate crime, and facing savage attacks on our very personal independence as Independent Living Fund closes along with DLA. Yet how we are mobilised, having grasped the opportunities of social media to connect and protest. We are often overlooked by the mainstream media, yet no one can deny we have a new presence which is unparalleled – and we must not let the pressure up for one second.

But now, sick of the TV coverage I’ve made my writer-self watch, I shall end on the observation that on the day Margaret Thatcher died, so did Disability Living Allowance. Which means, after 30 odd years, for me, the fight must go on – and on. Protecting what we have, and battling, hard and determined, to go further for the dream of full equality.

The Way It Really Is: a disability incident

I’ve been ill. Unexpectedly. I was in hospital for 8 days. Magnificent caring staff – amongst the best I have known in a 30+ years NHS experience.

I come out and need to recuperate. With this in mind, I book a break with my friend S for the end of May. A weekend in Exeter, a bit of history, a bit of West Country, charming little craft shops and a pretty river. All fine and dandy. I even manage to get a deal on a hotel, the Mercure in Exeter, via Trivago.

The hotel is opposite the cathedral and sounds in a perfect position. It states it has 7 accessible rooms and comes up as having facilities for disabled guests on all the usual hotel sites. I book in confidence, with a note to self to firm up the access details afterwards.

Booking secured, I call the Mercure, Exeter. A pleasant, helpful woman explains they don’t have accessible twin rooms. I remark that I do not sleep with my Personal Assistant so they need to sort it out. An extra camp bed perhaps? No, it won’t be allowed, she says.

Seeing as I’ve just had a heart problem this is not altogether good for me and I take deep slow breaths to stay calm. She says something about it being the type of building – the words reasonable adjustment flash across my thoughts and I persist.

She tells me she will talk to the manager about it. I sabre rattle politely about DDA as she suggests I may need to book another room for my carer. I suggest it should be complimentary. A comment is made that this ‘problem‘ is why ‘people‘ should call up before they book.

My question is why? No, really. This is a prime example of a disabling barrier. Lack of correct information before we even get to the hotel and then its inability to supply twin beds. These things are so simple. We have an ageing  population and disabled people who are much more active. Why is it difficult?

It is about equality, or lack of it in this case. I cannot afford to pay double for my simple right to take a weekend break (PA in second room) and it is not safe at present for me to stay alone in a room anyhow. Quite frankly, why should I, when I booked a twin-bedded room?

The Mercure Exeter have yet to get back to me, despite a promise of a phone call. I’ve paid; as it stands now, I will be strolling into that hotel, with a ‘carer’ and saying – deal with this. But I don’t want to. I want a pleasant, peaceful break without having to get into activism. Please. I’m on holiday.

Incidentally, Wednesday. We know what is to happen. I wrote this on Facebook:

If I hear yet another Thatcher eulogy I may well end up back in hospital. Passing note: Thatcher’s government resisted any kind of civil rights based anti disability discrimination law – and so we ended up with the toothless apology that is the DDA. OK, et a family grieve privately; but let us not forget her foul and small-minded yet terrifying ideologies brought us to the point we are at now.

And I am cooking up a juicy blog to post on Wednesday. I’m of the Thatcher generation; the scars run deep, and are bleeding anew at the society we have today of individualism run amok. Thatcher started this-we have value if we ‘produce’, if we have money. Her spawn (including war-monger Blair) have certainly carried forward the stench from her flaming capitalist torch with grim success.

We have to remember what Thatcher started, what she changed that affects us now. Get ready…

Independent Living and Me: 120 words of personal freedom.

I saw the sea today, out with my boyfriend who lives on the south coast. Grey and simmering, faint sunshine tipped the tops of waves by late afternoon.

I’ve been unwell, along side juggling an intense workload. I need peace. What better than the sea and crisp air to recuperate?

My support worker drives my car. She assists me in and out of the car. For every task, she assists. From very personal to specific. My writer’s tools prepared; laptop on table, note book to my hand.

Will you, DWP, take these reasonable and productive activities away from me? Am I so “underserving” of these human acts of freedom,  because of the chance reality of who I am – a disabled woman?

Saving ILF. Day two: Into the courtroom, history in the making

Weary for many reasons, so my activist feathers are not so erect after the excitement on Wednesday March 13th, at the Independent Living Fund vigil and the start of court proceedings to challenge the legality of the government’s consultation.

I started this blog on Thursday while watching Channel 4′s programme ‘Born to Be Different’. This documentary has followed a group of disabled children since birth.  Zoe, a disabled girl of 11, trots off to mainstream secondary school for her first time. She is a bubbly child, stoical with a cheeky smile.

I’ll write about this programme in another blog.  For now I want to note the poignancy of Zoe’s journey into adulthood. It will be fraught with extra difficulty against the backdrop of what we were fighting for on Wednesday, and the hideous ideology that has lead to it. I’m apprehensive at what awaits these young people. How the mainstream can coo in awe at them now, the seeming heroism of their battles with their impairments; yet the polarization is plain. After all, some people out there espouse that disabled children should be put down as too expensive. Whatever else, hit past 16 and voila, from cute kid to scrounging crippled adult.

I will never forget Wednesday. The morning passed in a very British mix of sunshine, rain, hail and blustery wind. During the speeches at the vigil, I delivered this ironic piece penned by myself and Sophie Partridge (both current receivers on Independent Living Fund) for the occasion.

We would like to announce to you advance notice of a new perfume range. 

“Parfum de piss” – the authentic aroma of the neglected disabled person, capturing the fragrance of the lavatoire, fresh from the soiled bed and chair.

This scent is for those special enforced moments, hours, and days, when the care funding and independence is cut.

Available to you now in several varieties.  

“Damn-You Dew”, the delightful smell of meaningless lives and empty existence.

“Non-Veggie”, with the top note stench of the individual disabled person starved of fresh food.

“Bouquet de midnuit”, an essence of frustration that encapsulates captivity – within your bed, your four walls, set against the happy aroma of folk living their lives.

“Desperation”, the ultimate scent, full of the final inevitable pong of condemned worthlessness.

Available shortly from Ex-recipients of the Independent Living Fund

Manufacture supported in the UK by the Department of Work and Pensions.

People laughed where we hoped and the point was made. Expect to hear this skit again in various guises over coming months.

The rest of Wednesday was bathed in a grey indecisive light. We were lead past road-works and cobbles to the side of the court; the famous front entrance not accessible (of course). Inside we clogged up the security checks, and filled the corridor in our wheelchairs; lawyers in their gowns nervous in picking through such an outlandish, unprecedented gathering of the disabled. An usher guided us graciously in the right direction. We are informed the accessible toilet is three floors up. I predict a queue, as on the occasion we went to the central lobby in Westminster, after the Hardest Hit March last year. Never had the like been seen.

Today, we are in a modern court room, a sterile place. I scribble notes in my journal – and hope I’ve distilled them into some decent shape below.

How far they (the legal folk) seem from us, I muse, as we, disabled people, fight for basics they can scarcely understand. Rows of books stand attentive on uniform shelves. I wonder if you are real, you books in the court? The Royal Courts of Justice. Do you groan with helpful law, while we sit, sit, sit, most certainly sit, defiant-stony, fitted into any reasonable corner we find, a bristling company of wheelchair-users and allies.

It’s a modern room and disappointing to my writer’s sensibilities. The lights are insipid boxes on the ceiling, white and characterless. Microphones hang high by the wigs, barristers and judge alike.

Our barrister begins. A spiel of sub-clause, tab, contexts and M’Lord. We sit, as we must, in the best effort of silence we can manage. Page 54: he quotes, elucidating the judge. Panglossian: a word not liked.

Independent Living is the jargon term: so says our barrister. A sharp thought hooks my mind at those words: independent living. Does any of this truly link to whether I am condemned to sleep in my own pee? To live with dignity, to be the most I can be?

The benches look new, horribly, squeaky new in a strange shiny flat-pack wood appearance. I sit next to my ex-husband, and good friend Gabriel Pepper, who is one of ‘the five’ bringing the challenge to court. With a secret smile I think of the dusty pews, church fonts, standing stones and endless ancient wonders I have seen on holidays with him over the years. Holidays possible because I have ILF funding…

Words and more words from barrister, from the judge. I dismiss the ugly carpet with its prissy pretend gothic motifs and realise how alien we are in this august environment. Stubborn and made radical, not so polite with our flaunted impairments.

In the chill dry air, solicitors pass notes; the defendants – the DWP – shake heads, faces emotionless. The tedious technicalities of the process plod on.

Sly naps threaten us as points are picked over, paired to strange bones we cannot recognize. We cough, gurgle, swallow, yawn, fidget. We are what we are and make the effort to listen, as the legal process begins the tentative untangling of our lives, our survival. I leave when nature calls, causing a pleasing rearrangement of the court space; this is our reality, we shall not apologise for it.

That was the end of my involvement in day one of our battle regarding ILF, as it strained into the public eye. Not public enough; the new Pope hogged far too much time regarding TV coverage. But we will be back and we will prevail.

So, as I prepare for bed (with assistance), let me say this; we fit uneasily into the labels you give us; the ‘severely’ disabled. But do not for one moment believe that term equals meekness and our silence – it never will.

From Bedroom to Ballroom to Courtroom: fighting for independence

I woke up at 8am, unusual for me as I don’t move much at that time and need some time to be fully alert. My kitty, Bess, is quite surprised at my early rising. PA Jan helps me sit up and take medication. A little while later she assists me into my wheelchair. After some initial ablutions, it’s a cuppa; and today a wait by the phone as I psyche myself up to do an interview on BBC Radio 5 Live in regards to the court hearing about the Independent Living Fund.

The government announced its closure in December 2012 but even before then many of us and our organisations felt the bell tolling its doom. The lacklustre and often nonsensical consultation process seemed nothing but a tokenistic gesture, and that is why we brace ourselves for the judicial review to challenge it.

But I want to rewind five days. Last Saturday I was delighted to be performing a spoken word piece at Criptease, part of the Women of the World festival at the Southbank, in the Clore Ballroom. A neo-burlesque show celebrating disabled women’s bodies and sexuality, I’m proud of my involvement, past and present. This is me, one strand to my work, part of who I am. Defiant and unabashed. To talk sex and strip is as much of a political act to me as is going on a rally.

Another day and here we are fighting for freedoms so basic it is criminal we have to spell out the intimacies of our needs to make a case.

What do non-disabled people do in the mornings? Do they have a pee, a shower, breakfast? There are always variations on a theme, but what is so hard to grasp here? I do these things – with assistance. I leave my home – with assistance. I socialise – with assistance. I work – at the Southbank in a burlesque show – and very much beyond; with assistance.

Back to 8.35am this morning. Radio 5 Live call and I do my best for 4 minutes. What independent living is about; the realities; the hypocrisies from the government. I briefly mention my appearance at the Southbank – because the assistance to pursue my potential as a writer/performer, is as fundamentally important as that support to get out of bed.

It’s a cold day on The Strand as I manage to find parking in an area where Blue Badges cannot be automatically used. There’s a decent gathering by The Royal Courts of Justice, with its iconic facades. The press cram through us, steely for photo-opportunities. I speak to any who ask – this is not a day to be sniffy. I say a few words to Tracey and Ellen from Inclusion London, see many friends and old campaigners.

Speeches are made, we are roused and rallied. I feel that deep glow of pride that comes from unity. Together we are stronger, a cliche but true. Soon it is my turn; to read out an ironic sketch penned for the vigil, by me and Sophie Partridge, close friend and comrade in the cause. The clouds gather in darkness and sharp white hail falls on my red hair and green coat. Unperturbed, I deliver ‘Eau de Piss’, to laughter and good effect.

More on that tomorrow. And the surreal experience of going into the court room with so many other wheelchair users.

I’m tired now. I am ‘severely disabled’ after all…

Writing, the lonely road, a thankless activism

Yes, I’m a bit grumpy. We’re fighting so hard for such basic rights as in the right to have our daily functions met, that everything else risks sidelines. Exhaustion sets in and then a cycle of gloom fogs over me. I lose judgement of my own work and worth.

I’m raging to put my energies into fighting the horrific attacks disabled people are under, yet, how, how, how can I do more? I’ve been around for so long. The scribbles in my journals from Thatcher’s harsh reign remind me of what we’ve faced before. Progress creaked on. We are on the brink of losing it. What else can we do?

Don’t worry. I fly up again after a bit. Everything is slowly moving forward with my work, you know, the blood and guts thoughts into words, that I have to do. It’s not a torment, but it can be overwhelming.

The more I do, the more I write, the more I will fight. Humanity must shake off its imposed facades and let us all into the fold, for fuck sake.

OK, enough bleating. Back to it.

I was there. After the crazy steam punk, fire, thump bash that was the Paralympics closing ceremony – what is the true legacy?

It was as if I was entering the ancient Roman Colosseum. The overwhelming mass of human beings in the Olympic stadium was truly awe-inspiring. Positioned neatly at ground level, the areas for disabled people were decent enough, though Autumn tickled us with a chilly breeze.

The ceremony was quite simply the maddest of events. It was spectacle. It was noise and light. It was fairy land. There were monsters and dancers and people swaying on wires. Oh, and apparently there were disabled athletes, who seemed to have been herded into their seats to stay put and enjoy, or else. I liked the parading of the flags and spotted one or two wheelies, and can only hope the majority were disabled.  

The performance aspect of the event was disgustingly short of disabled performers. Believe me, there are many – this is the sector I work in.I know these things. Actor/performer Mat Fraser drumming with Coldplay did his fine work, and I gather there were a few more – but where? We needed to know.

It was good to hear the Paraorchestra but they could have played for longer. At least this would have limited Coldplay’s turgid set, though I suppose it was good enough in that ‘rawk’ sort of way to get the crowds going. Does Rihanna have a hidden impairment? Let us be told.  

As a wheelchair-user, I want to point out that upon leaving the stadium into the hordes, I was stepped on and stepped over, pushed and corralled by mindless non-disableds, who minutes before were teary eyed and cheering the ‘inspirational’ Paralympians. Ho hum. But I have noticed a subtle positive difference in how people are towards me on the street.

This is good, and bad. I fear a polarisation of opinion which will play right into the hands of the Con-Dems. Now we ordinary disableds will have to Try Harder and Achieve. If and when we can’t live up to that idea, we are truly damned. The reality for us is still not reported with detail or variety, and so the prejudice and misconception goes on. And on. Come on now, you must get a grip that this isn’t all about trying!

I am indifferent to sport, no matter who is involved in it. Yet I did enjoy moments of these games, and the closing ceremony, in ways that surprised me. It was moving to see Ellie Simmonds and Johnny Peacock put out the flames on that beautiful torch. I now know who Dave Weir is and I warm to him, to many of the athletes in a somewhat slushy way. We will have shared experiences, they feel like brethren because we know what we have to fight. Maybe a few are professionals and will go onto lucrative sponsorship deals etc etc. Oscar has the pretty face for that, Johnny too. But it will not happen to them all and no doubt the rest will be stuck facing the attacks on our rights, cruel unjust assessments, benefits cuts and hate crime, along with the rest of us.

I tried booing Boris waving that flag at the closing ceremony, but the jingoistic choir was in full happy swing. Last Monday, I was at an event at City Hall celebrating 10 years of Liberty, one of the biggest disability arts events in the world, which took place Sept 1st-3rd at the Southbank. There were many suits noshing the canapes amid us disabled artists. As the event comes ‘from’ the Mayor of London’s office, and Boris loves waving that flag, you would think he’d show up. No chance (perhaps a blessing) – a truly sub-sub minion was sent in his place. Clearly he had better things to do, like comb his hair.

If I hear that pointless word inspiration one more time, I’ll have to take up the paralympic javelin and aim for the groin… We’ve had it all our lives, simply for being, for living, for doing.

Call my writing inspirational for the right reasons. Give context! Give me (us all) the space to be, to create, with equality and I might shut up!

I want a lasting legacy from the Games, but the fight goes on now to tackle the UK government’s ongoing destruction of basic rights disabled people have fought for over many hard years – and that is where we must take the focus if anything genuine shall come out of this crazy contrary 10 day show.

Oh and just to mention – my book Desires Reborn is now out on Kobo along with Kindle and at Itunes, and at Waterstones. Please read for an alternative perspective on disabled peoples lives.