London. It was a fluke, my moving here and nearly 20 years ago now... Oh I had visited - weekend trips and skives off school (I was a boarder down in Hampshire. Lunchtime concerts at the Royal Festival Hall (amazing how appealing classical music becomes when you have Saturday lessons!), then freezing outside after, with our packed lunches and cuppa soups!
Posh London: Once an evening trip to the Royal Opera House for the Magic Flute and falling asleep on the way home… Throwing up on the coach at fourteen because we'd all been nicking champagne for the guests at a performance our choir gave at the Glaziers Hall.
Mythical London: 'Unreal City' Dreamily remembered visits to Nana and Grandad in Winchmore Hill, the city where my sisters lived and dad was from! Journeys to the capital by train and being met at Victoria Station; the accessible loo with the grey and black tiles, which hasn't changed in all this time! Galleries & parks, bands and gigs, flats up-stairs... And "Ok Mate?"!
Scarey London: A chance meeting and the offer of a wheely-friendly flat in The Smoke (those were the days!) I felt the fear but did it anyway and so to Camden then I came! Camden, with it's trendy market and a Comedy Club! Cafes, lattes and cobbles.
Dogs in Regents Park and my neighbors cat Lassie! Barbecues and parties. The first few days and I bumped down huge curbs, crossed high streets between crossing cars then cried with relief at reaching the other side! Bumping in to my sisters because now they lived just up the road... now that really was scarey!
Political London: with its own Mayor! And me who had a disability but no identity, or Social Model perspective. I was neither diverse nor empowered but now I discovered Personal Assistants over Carers, in all their flavours and suddenly Zulu was spoken in my living room! Assistants came via an agency called Body Bank, run by a woman sounding like an EastEnd Gangsta! I moved in and on, my life opened up.
Poor London: Me in my homely new home while so many were homeless, outside, amongst dirt and rubbish-strewn streets. I am not a Good Samaritan; like most other Londoners, I usually pass by through pollution and noise.
Accessible London? Cycle lanes, congestion zone and parking fines that felt like they fell on my van every 5 minutes! Black cabs in the rain: we wheelchair-users are like Marmite to Cabbies - they love us or hate us! Here we are all together, in traffic, on buses and amidst endless, ENDLESS building and road works!
Equal London: Where I have a Life, work and friends again of the coolest kind (Pen.) One sister moved South whilst the other, just went South of the River... Sacrilege! But the canal came closer and the damp set in. With the cuts, I escaped my sinking flat and jumped boroughs to Islington. Captained by Jeremy Corbyn!
Now, as an independent disabled woman, I protest at Parliament, have been chained for change, Occupied(ish) with tea and sausage rolls! Marched down and blocked roads, stopping that flaming traffic!
I watched The Lady Killers a while ago. Shots of Kings Cross as it was! Never in a trillion years did I think I would live just up the road, live here, in London... my London.
As no doubt many of you will know, it’s hard work being a freelance artist, especially if you’re what I lovingly call a 'Bendy Person' – someone like me with a very obvious physical impairment and what are deemed high access needs – and recently, this has taken a toll on my “well-being”...
Government Cuts, however rosy a picture they try to paint, have made it increasingly difficult for disabled people, including those of us who work in the Arts and this has taken its toll on the health of many of us! I believe art by its very nature, IS political; what we include in our picture / poem / prose and / or performance and what we chose to leave out.
Indeed whether ourselves as Disabled Practitioners are actively encouraged and included or excluded in the Arts at Large! Disability Arts (I leave all of you to the rapidly ageing (like myself!) debate whether we want to call it that are truly diverse and eclectic, from the personal to the political and back again.
Can we ever really separate one from the other? That single question has provided for me the continuing journey I feel I am forever on. Somehow our individual impairments are I think, always at the heart of our work, both implied and clearly stated.
When I write just as I am now, for example, my sentences are long to allow for time to work out what it is I want to say – hopefully by their end I’ll at least have some idea! – and are sprinkled with commas because when I speak, I break up my spoken voice with little gaps to breathe and subconsciously, this has spread like glitter, into my written text. Many aspects of my one woman show with Puppets 'Song of Semmersuaq' have been personal and political, for me.
It is perhaps ironic that having to an extent `denied’ my impairment in any obvious way in my creative work, recently it has re-asserted itself big time in my life. I’m having to adjust to dreaded “new, exciting” (not!) health `challenges’ (give me a so-called Comfort Zone any day!) and re-think how I work. Maybe performing isn’t for me any more?? Maybe it is...
Of course, the future for all of us is uncertain but perhaps especially so, for myself & other disabled Creatives. The Power of Media is huge in determining what is acceptable behaviour for disabled people.. that which is smiley, grateful and by turn it seems to me, Arts Funders & venues go for what seems `popular’; work that is Clean, Inspiring and not just ever so slightly, mucky around the edges with a tea-stain of Identity or streak of Activism. Oppression is not always obvious or consciously intended; it occurs where some voices are celebrated and made Loud by the Establishment whilst others, remain suppressed and unheard...
There IS and should be room for all; the Nice – and believe me, no-one does #KuteWithaK like this RubyPixie - ! in equal measures to the, err.. not un-nice but just a little more `earthy’?! WE the practitioners must set the agenda as to what is Disability / Quality Art (tea-stains are often a mark of authenticity and as that Mr. Twain said, “All that glisters...”) and not subconsciously, or otherwise, be led like the Fairy-talers in pursuit of the Emperor’s New Clothes.
Is the only time Cripplies get a look into `mainstream’ arts when we’re ‘spilling the beans’ about impairment?
I seem to have seen more shows in recent months than I’ve done in quite a while! The most recent, which I’ve genuinely loved, being Jess Thom’s 'Backstage in Biscuitland' and Caroline Bowditch’s 'Falling in love with Frida'.
In both I’ve had moments of being caught up sharp, as if by red flashing lights when things have started to go all ‘Medical Modelly’. It feels to me that all of a sudden we come to a section intended as the `educational’ for non-disabled people bit all about impairment! But is this just me having perhaps an over-sensitive reaction?
I was recently informed by a Tribal Elder from DPAC that the Social Model of Disability does not automatically rule out discussing impairment; it’s how it’s done, context etc.
As you Dear Readers may know, I’ve been formerly critical of autobiographical/ impairment laden work by disabled artists. Have I been wrong in this? It has felt to me that the only time Cripplies get a look into `mainstream’ arts, is when we’re ‘spilling the beans’ and the private becomes public. That’s absolutely fine, if that’s what the artist intends for the piece.
Artists like Penny Pepper with her spoken word show ‘Lost in Spaces’, was totally up-front about this, as was Liz Carr with ‘It hasn’t Happened Yet’; both of these pieces included some reference to impairment. Do others perhaps feel pressured into impairment talk in order to be more `marketable’ to venues? Or is it purely personal choice?
It’s certainly better that we tell our own stories – Nothing About Us etc. as a way of countering Tragic over Brave – than having others tell tales for us and does it in fact only tell half the story if we exclude impairment from work all together? Shows like Robert S-Gales 'Spasms...' have successfully opened that Pandora Box for non disabled audiences whilst Scope’s 'End the Awkward' campaign has proved controversial for many, including myself. Are there parallels to be found in LBGT and / or Black Arts?
So here comes my Flashing Red Light revelationary bit! Part of my reluctance to tell any (usually non-d) person about my impairment, stems from all the baggage being labelled brittle has caused in my life; from my Mum being looked at as if she were a Bad Brittley Mum because she didn’t know exactly how many fractures I’d had (and me being a crap one for not having counted; tho’ of course no one expected my Dad to know!), through fear of interpretation of that label and being refused an interview at one Uni, years ago until I attended a Medical (it never happened!), to just recently being asked for a doctor’s letter before I could even `have a chat’ with a Personal Trainer about the possibility of some supposedly disability friendly gymn sessions!
Truth is I’ve always resisted any impairment related discussion, yet here I am, getting it all out...
And after the defeat of the AS Bill... the need to lobby for better palliative care, support packages
What a difference a day makes; a day and 4 months plus if I’m honest. Last time I wrote here, I was so sunk into the gloom post-general election I’d actually turned to poetry! Friday morning, I set off on a train to Manchester, on my way to the AGM of my impairment group (the politics of that deserving its own blog!), knowing many of my friends were ensconced outside parliament, urging MPs to vote against the Assisted Dying Bill.
As the sun came out at my destination, so the news came through that the Bill had been defeated. I breathed a sigh of relief... My `journey’ as a disabled person in relation to Assisted Suicide, has not been straight-forward. It seemed to me way back, crassly as it feels now, that it was all about personal assistance choices; if someone wasn’t physically able to `top themselves’ then they should be able to direct someone to do that for them, by what-ever means.
To say I had not thought this through is something of an under-statement! I didn’t think about who would do the final deed/ how they would feel/ what implications it would have for those who did not want to exercise this `right’.
I was also not convinced that it was `About Us’ Disableys. Once I began to join up the dots however, I began to grasp the wider issues; it became clear that the main proponents of the Bill were not so much concerned with the pain and `suffering’ a terminally ill patient may endure in their last days but primarily, for their lack of autonomy; their dependence on others. That to me, smacked of judgement on my entire life.
Of course I understand that being born with an impairment is a different experience from that of someone who acquires theirs. I often feel however, that I’m slightly patronised at times by others when viewed either as some sort of Higher Being, somehow able to endure a truly Orrible existence, being “Soo disabled”, or from the attitude of “Oh she doesn’t understand, Bless Er.. doesn’t know what she’s missing and actually, she’s a bit thick anyway”!
Well I may have my fikk moments but I’m certainly no higher mortal, thanks and am very well aware of all the `cans’ I’d have with a different body...
Grasping those wider issues, is something I feel those that those proposing the Bill, have failed to do. Perhaps this Bill has called into question how we define a ‘right’ and as the saying goes, ‘with rights comes responsibilities’; what may appear best for an individual, may very well have dire consequences for others.
It seems ironic that the majority of MPs who voted against Friday’s Bill are Tories, where their party policies seem designated to favour a few individuals over the plight of many. Right now I feel that those of us who resisted the Bill, need to put our `money where mouths are’ and lobby for better palliative care, support packages etc. That’s our responsibility for the right we have to live.
I came home on Saturday with the knowledge that a second momentous vote had been won by Jeremy Corbyn! Victories may be few and hard won but they are victories, never the less...
It was there in the skies. The storm was upon us.
Grey, howling winds - doom.
so broke the storm but no land was Ahoy.
Not for us. The vote was cast and once again,
We are set adrift; their admissions of plunder whistle in the wind,
Hushed confessions of Others votes.
Notes of discordant guilt are clear; knowing they X marked the spot for their own treasure, leaving Us with.. sand?
Should I judge? Ignorance, willful or otherwise, is still ignorance at best.
Lies, at worse.
We are afraid and still at sea, so we cling to each other; Sharing, Tweeting,
Signing a thousand messages cast into bottles,
We cry out, enraged but… true deafness has no truck with sensory loss!
We are brave, bold and ask the questions they do not want to hear.
And for their answers They patronise us,
As if we are children with `bad dreams'...
"Of course we'll `look after' you! Of course we care..."
Silly children, ungrateful child. Useless Eater.
Were we EVER the pirates that ransacked the treasure trove?
Blame was laid on our shores; we the one-eyed, legged, crooked villains of old...
Weather changed. Vote was cast. The `Care’ Bill came in afore the new Bluer-than-Blue Tide.
Have our rights to Independent Living gone whistling in that wind?
We cannot remain plundered.
It is time to take back, push forward.
Raise the cutlass.
Skull & Crossbones flag still flutters and the storm will rage again.
The spirit of our fallen crew will not rest;
So we breathe the salty air, dust off sand, hoist anchor and set sail AGAIN because this
Battle is not yet over. This tide must be turned...
I don’t think of myself as being ambitious but thought I’d look it up – just to check! This is what the online dictionary said about it.
Ambition, noun the object, state, or result desired or sought after:
Interesting, a challenge for me personally as I think half (of what I consider to be my) lack of ambition, is not knowing what the desired result is...
Desire for work or activity:
Okay so this is more like it! Something tangible, something I can relate to. And finally...
To seek after earnestly; aspire to:
Crikey! So what is it I’m seeking? Do I really aspire to anything?..
I think for many disabled people such as myself, our main ambition is to stay well and keep going! Everything else is a bonus... So with that in mind, I’ll go with the second definition!
I wrote my latest piece, Song of Semmersuaq for myself to perform with puppets. This was for me I think, quite ambitious – wanting to create something for me and perhaps the height of Semmersuaq reflects my alter-ego?! Who knows... Personally, the word ambition conjures up images of big people doing big things! In the Arts – especially perhaps DIsArts there are those High Achievers who seem so confident, who get the big funding and make big bold work – under-water w/chairs etc. I’d drown. Really!
Of course all that’s great and I’m happy for others to do that but it’s not for me. I read somewhere once that Writers write, what they themselves want to read – so in that case I make work for small fluffy ladies! Something of a niche market! I like to think though, that there’s a bit more to it than that and aim to work with Universal Truths. I hope what I do is okay; we are all individually unique.
It feels important to acknowledge what barriers stop our ambition, in order to overcome them. Also that I feel I’m probably my own worst enemy! Having just officially reached my mid-40s, perhaps it’s time to get a little ambitious; just a little.
Having somewhat stumbled through my work – my career (a word which 20 years ago, I never would have thought applicable) almost by happy chance - I do wonder what could have been shown to me those 20 years ago, perhaps even earlier, that may have encouraged my ambition then? Initiatives like Shape's Creative Steps programme? Seeing other disabled Creative Practitioners? Perhaps minor funding streams that offered paths en route to bigger pots of money; greater exposure so individuals can make their own journeys at a pace right for them. I think we can certainly do with those now, irrespective of what-ever age we are.
I want to see young disabled people come into the Arts and excel; for them to have the ambition I have possibly lacked over the years because hopefully, some of the barriers us Oldies have faced, are slowly being dismantled. I have never looked for role-models, never quested to be inspired; I’d much rather learn. Yet I do like to search for Mini-Me’s! Being my size, that’s actually quite a challenge but every so often a younger person appears who, not necessarily physically, reminds me of my former self and and I want to see them do well in this profession. Shape, Candoco and Graeae now have extensive youth programmes, as do Drake Music which I have recently become involved with and I do feel these projects are key to unlocking creative ambition. Of course the work has to follow, for that ambition not to be thawted...
Which brings me back to the definition above and my own work. Quite often I find myself saying Yes to anything & everything I’m offered! My first professional acting job was playing a character called Far Away Alice – aka The Scary Fairy – in a `horror’ piece with the David Glass Ensemble! This actually, was an incredibly hard but great opportunity at the time. However my days of being carried around on stage, are hopefully over and I’d like to think I can be more discerning in the work I do.
The reality is tho, due to financial pressure to have work, there’s a danger we can become Jack of All Trades and mistress of none. My ambition has always been to do what-ever I do, well and the best that I can. This year, I’ll try try to steer a path by that course with a smidge of ambition thrown in. The return of Unlimited as, We Are Unlimited can only be a positive and I hope that through it, there will be a real diversity, not only of work but also scale of that work. Not just high profile venues like SouthBank but alternative venues, where the ArtyFartys are less likely to hang out.
This year as part of Disability History month and the Together `13 Festival, I performed Song Of Semmersuaq to an audience comprised of families who utilise Richard House, a hospice for young people with what’s termed `life-limiting’ conditions, in Stratford. Song of Semmersuaq was part of a day of performance workshops there, for young aspiring performers and the performance ended with a discussion with myself, Nicola Miles-Wildin (who played Miranda in the Paralympic Opening Ceremony) and Eve Smith, (who appears in Sky TV's forthcoming drama series The Smoke). We received questions from the young people and their families present, about life as professional disabled performers and the whole day was very successful.
Punters, particularly disabled people, can’t always get to the Art – so lets start taking the Art to them. Not in a Special way but as a means of genuine access. Let's be ambitious for the Arts and for each other, not just as individuals with egos a-go-go but in a real way that means we are truly All in it together..! Thank you,
Well I don't think it's controversial to say it's a tough time in Crip World right now! Surely there must be a disabled oracle somewhere that tells of the impending doom to be expected in 2015; DLA to become PIP, tax credits go `universal' and the Independent Living Fund closes...
Now that, gentle reader, IS controversial. I've been involved (surprise surprise) in the campaign to halt the ILF's closure and cause a veritable government u-turn. We've called the campaign Because We're Worth It.. `follow us on Facebook, Twitter' etc. As a call to - quite often `little' - arms, I've tried to recruit my fellow Bendys. Certainly not all but many of us original ILF recipients (those of us still on this planet), are characterised by our very obvious impairments; our bendy/un-bendable bits! Arms, legs, spines.. you get the idea. Not for us the dilemmas of hidden impairment eg. do we declare our disability status? - use a mobility or other aid, as a positive choice etc. Those choices were never the way of the Bendy! We iz physical and sensory! Innit.
Partly I adopted the term Bendy to get away from the Crip word; because that often raises issues of elitism, Criperatti etc. Bendy is a term I personally identify with. Yet just by using that term to signify obvious impairment was I not creating yet another in-club within the disability dysfunctional community? Accusations of elitism have arisen against us ILFers - "We're all Middle Class, White" etc.
I went to those consultations last year with other users and I know that's simply not true. There's a view - certainly the government's - that those of us funded by the ILF have been the Chosen Few (nearly 20,000 of us actually) and that no longer should we be allowed to get away with it! No longer should we expect to live independent lives in equalness, with those who DON'T need high levels of personal assistance. To be frank, those of us who can't wipe our own lovely bottys without support.
It's as if by us having those rights, some deem that we have robbed others of theirs, to do so. We should therefore, all just get chucked into the hell-fires of the general Social Care pit and suffer along with every other Crip! The fact that ILF Bendys being added to the mix, with the majority of us having what Local Authorities regard as 'critical needs' that therefore have to be met - at least tokenistically - will mean a LOT less money to go around for all, seems to have been conveniently lost.
But back to Bendiness. It IS all linked - trust me! And at the start of it all, a friend felt they weren't worthy of contributing to the debate because they don't obviously Bend. That challenged me to review my thinking! I felt very strongly that this particular matey was Bendy at Heart; not fixed or rigid but open to life, impairment. Because as disabled people we're always on the outside edge, we've grown adept at shaping/bending that life to us. Being Straight isn't always about sexuality I feel, it's as much about our unwillingness and inability to conform to societal norms in every way, which takes me back to my school days!
Imagine the scene gentle reader. Little Soph aged 15 at Ye Olde Special Boarding School. Happily hiding her packets of 10 Silk Cut in her cassette-case (was that not the whole purpose of those cases?!) when one day, she forgets to close the case. Packet is spotted by fortunately benign `House Parent'! Her wise words remain with me to this day "Sophie, learn to bend the rules. Not break them." With my impairment, that's particularly sound advice, so I've consistently been Bending, in one way or another, ever since.
That's it then. My justification for being Bendy. I don't mean it to be exclusive to certain impairments, or even disability. More an attitude and a state of being. Lets all identify for ourselves, the points where we each bend. Then Bendiness really will be Best!
On 15 September I was asked by the Royal College of Surgeons to speak about `public bodies, disability on display’. As someone with a very visible impairment, I do feel I’m always on display. Display itself, is not necessarily a bad thing. I’d certainly rather that than being shut away somewhere, hidden from view. The quest for me always, is to gain as much control as possible over how I’m displayed. Whether that’s simply by my choice of clothes as I trundle up the street, portrayal of myself as a disabled person in the press & media, a photo or on stage etc. It’s a bit like being famous, but without the red carpets & the wealth!
For some of the original exhibitors in the RCP’s collection there were, I think, varying degrees of `fame’ – or notoriety at least – Blind Granny for example. They too had adopted the attitude: “If we’re going to be looked at anyway, we may as well get paid for it...” As much as I’d like to take credit for that line, it’s actually a quote from Kaite O’Reilly’s stage play, Peeling.
It seems each individual from the historical portraits in the exhibition were selling their uniqueness, their `best feature’ in fact being the curves in unusual places. They were reguarded as freaks and we could debate endlessly whether contemporary disabled people are revered as such today. Are Paralympians in fact – just Super Crips?! Were the individuals featured in the original portraits, the Super Crips of their day? Individuals who had, to a certain extent conformed to that classic cliché of Triumph over Tragedy – because they had seemingly, turned exploitation on it’s head and were able to gain an amount of respect, earning a living, by exploiting the curiosity of the viewer.
Personally I don’t actually think any of the historical individuals were ever really, beheld in fear – more admiration for looking so different because, as humans so easily jaded, we long to see something new... But it’s as if – and I’m sure this could also be said of the historical exhibitees, the non-disabled / general public, want the myth of disabled peoples’ lives and not the reality, which can be quite mundane like most peoples’.
I’d like to end with what another Focus group member of the RCP project – Mark Pampell said of the historical portraits: - "If those gents & ladies didn’t exhibit themselves, we wouldnt know about them.."! The Google on-line dictionary defines exhibit as `to offer or expose; to place on show; to make manifest’.
I am truly grateful that those Ladies & Gents did in deed make themselves manifest. When the exhibition was in place at the Royal College of Physicians, my photo and blurb was shown in a room along with those of small people from the archive. I felt this sense of almost pride and definite well-being, having my own portrait put in a context with theirs.
I was following in a historical line of obviously impaired people and was very happy to be there. How much longer disabled people – with both visible & invisible impairments will be part of our society, I don’t know and am fearful for our future. But I am glad to be here, living as I am and immensely glad that those in the past, lived as they did, too.
Go to www.disabilityartsonline.org.uk/re-framing-disability-gallery to see a selection of the portraits in the RCP collection.
Yesterday, having had a Care Manager / Social Worker imagine I can walk because she "didn’t want to wrongly assume I couldn’t", I’m really not in the mood to do the ConDems any favours. Not that I ever was! On realising I was not, as she had wrongly assumed, "able to manage a few steps(!?)" she then wrote in my Care Plan of my inability to Mobilise. What am I? An armoured tank?! In this so-called Big Society, I’d probably be better supported if I was.
In an attempt to support ourselves at least as Disabled Artists, several of us have formed a production company. I’m Blogging here not in fact to vent spleen against The Dark Powers of government but to announce to the world – via DAO – the launch of The Big Lounge Collective! Thus called because we meet in my big-ish lounge. We’ve come together in the hope we can make the work we really want – as no one else is going to do it for us!
The majority of our present Magnificent 7, are knocking on a bit and have become increasingly frustrated at the lack of progression in our working lives. Amongst all the various models for individuals working together collaboratively, we felt the term 'Collective' suited best as it’s informal enough to allow flexibility. We don’t all have to work on every project and are free to do other things! It’s the ideal relationship! That and the fact that most of us are 70’s throw-backs. Motivation for collecting together, being that we’ve all received funding to have work `in development' but few have got things in production.
Reasons for our limited success are of course varied and numerous: has it been good enough? what people want? sexy enough?! Haven’t we played enough with the Bigger Boys or does it simply not fit in any appropriate box?
In this Hard Times Era, the boxes grow smaller and competition to get in them is fierce. The day I had the sharing of my present piece 'Song of Semmersuaq', whose development so far has been funded by Grants for The Arts, was the day the axe fell on many Arts Organisations. I’m presently playing the waiting game to see if I can get funding to have Semmersuaq fully produced next year.
So how will the Big Lounge fare in the Big Society? One of the things we’ve been advised to do in our ventures, is be Physically Present for each other. To quote the old Disabled People’s Movement adage, "There is Strength In Unity". If we can Voice ourselves as Cripplys and be loud in our work about the things that affect Us, as well as those that affect All – such as The Cuts, Assisted Suicide etcetera, then I think & hope we’re gonna do pretty well! And isn’t the best Art that which reflects Universal Truths any way?
The B.L.C’s kettle is now officially on, so please do pop in soon for tea and let’s have Society 0, Lounge 100+!
Sun is out tho’ still not much warmer than when I wrote my last Blog’! Weekly workshops at the Huddleston Centre, Hackney with a group of young learning disabled peeps, began beginning of December & culminated in a short performance last week as part of DYH – Develop Young Hackney Festival.
Co-leading, our remit was to focus on the transition period for these young people. All participants were post 16; some now attending College, some not. All are bright young things and truly with so much potential.
With the label 'learning difficulty' our group had very varied needs... don’t we all?! Finding common ground and making real the concept of Moving On, with young people who appear to have little autonomy & opportunity for self-discovery in their lives, was challenging. Having the added pressure of producing a performance at the end of the workshops, was more so. Until recently I have always been a somewhat reluctant workshop leader; often feeling under-skilled & confident in my role as`Leader’ / knowledgeable person / Grown Up! Not having the highest concentration levels myself, I’ve over-emphasised with workshoppees, thinking “What are we doing this for? This is bollocks! When’s tea?!”
In my life I rely on my verbal skills. Always I explain what I want / need because I can’t physically get those things myself. Working with others whose methods of communication are not the usual verbal ways, means that simply doesn’t cut the mustard. What was needed was the ability to think on my wheels. To get right on in there, down & dirty, improvise. But my brain is slow! All that explaining means deliberation when I needed to simply Show, not Tell. At first I was scuppered.
Somehow though, my ruby slippers clicked. All I had to do was trust the group, trust my colleagues. We learnt together, bonding with our Sign Names. Repetition of exercises & themes, created familiarity and security for us all. Then a track by Destiny’s Child gave the break-through. Suddenly this group of shy, inarticulate `Disableds’ were real young people grooving on down! It was revealed to us Oldies that title of said DC track – BugABoo – means when a mate is bugging you! This led to a whole discussion about what gets us riled and the participants realising that it’s ok to say things piss you off! You don’t always have to be happy and grateful...
Out of this came our performance. We only got to the tip of the ice-berg. How can their aspirations arise when daily lives appear to have such narrow parameters? Where is the context for them and how they can be achieved? Hopes of trips to Ghana were mentioned along side working in a pet-shop, as if places somewhere over the Rainbow. City Farm is just down the road, yet worlds away. Yet the journey has hopefully, at least begun. What’s needed now – as always – is continued support for these young peeps to see it through...
So here I sit, snug in my flat. A bluish sky through the window (above newly installed traffic lights!) while the world in various corners, suffers climate change’. Me, I’ve already had a bit of a year. So far, broken vans
,chairs (no bones tho thankfully!) and last week was topped off with a fire up-stairs at 2am!
My mind casts back to late November 2010. DaDaFest. Me with a Proper Cold and blocked-up ears, more deaf than usual. And freezing cold outside the Black Box in Liverpool. We whacked the heaters up in there as we, six Criptease women, moseyed about scantily clad; making pasties (and not the pastry kind). Some of us had done It before and some of us hadn’t. It was surreal, to be so un-dressed in company, in winter.
And not to worry... well, we worried a bit: what music for our burlesque acts? Names? Costumes?? Not that they were gonna stay on for long! We found an Aladdin’s cave in a store room, full of bits & bobs for routines. Teasing and tassel-twirling – kind of! – was learnt. Tracks were downloaded, a particularly Far Out version of `Lucy in The Sky’ was found for me & sparkly pink material bought... ‘Floozie Loosey’ was born!
It wasn’t just Criptease that made DadaFest for me. Two days of rehearsed play-readings, including a draft of my own piece. It was good to feel like an actor again - doing something that won’t embarrass my mum! Plus, with so much stuff to see / hear. Other Cripplys & Nons with clothes on and off... spaghetti falling from the roof... Bed-ins... a real warmth was generated... even with The Ibis’ heating system belting out cold air!! Old friends & new. Not having gone to Edinburgh Fringe last summer, my week in Liverpool more than made up for it. And now `of course’ there will be cuts.
Will DaDaFest happen again in 2011? Rumour has it that it’ll be on a smaller scale. Personally, I’ll be sad, as I was at the passing of Theatre Workshop, Edinburgh’s Degenerate Festival. All the old arguments will prevail: do we really need an Exclusive Festival in this century?
Without it tho’ – would six `obviously’ disabled women have had the chance to do burlesque? Would they have wanted and / or have had the confidence to? So what’s it about then? Is it therapy? Self affirmation?! All I know is, much of the work I saw there was high calibre, worthy of any festival. Yet I doubt without DaDaFest it would have the opportunity to play on those main stages again... 'Floozie Loosey' may never have got to fly.
A certain Master of DaDa-Beasty Burlesque, compered an event I went to the other night. First thing he said to me was “Last time I saw you, you had a lot less clothes on.” I held back from correcting him. The last time we actually saw each other was at breakfast next morning. That would’ve sounded worse!
Crikey it’s all been happening; what with Jenny Sealey’s cast pulling off a coup with Graeae’s Reasons To Be Cheerful. (see review in The Stage The show gives a chance for some true Crip Lovies to sing & sign + audio-describe Dury’s Spasticus Autisticus - loud & proud.
Meanwhile, back at the Royal Festival Hall last week, Candoco hosted a panel discussion on How much progress has there really been on the main stage for disabled artistes? The challenge in answering that question surely begins with defining what actually the main stage is!
I performed with Rhinestone Rollers again at Liberty Festival last month in Trafalgar Square. In many ways there isn’t a much bigger main stage to be had! So perhaps a better question would be whether in fact we Artistes get the main gig’.
``We agreed at the discussion that Yes, there has been progress but not enough. Whether I go out to see big gigs of theatre and dance – mainstream or other - or stay in & watch telly, I still don’t see many disabled artistes and even less so, those with bendy bodies.
A recent article in Disability Now by a Paralympian, expressed concern that athletes with more full-on impairments are being given less heats to compete in and less exposure in the media when they do get a chance to compete. The media always tends to feature those who look more like Standy-Uppy peeps sitting down!
Some impairments it seems, are more acceptable to a mainstream audience than others. On TV, physically different actors tend to get impairment specific roles, if any... Does this reflect a two-tier acceptance of disability / difference within Society? Should we all know our place?! Of course the Wheelies will be brought out again soon for the obligatory Children In Need and that trend will again be set...
The answer? I admit to having mushy moments seeing the inclusive cast of Reasons but have we then Sold Out to the Norms? Do True Crips now have to be chaperoned on stage by those who don’t bend?! And in terms of access – just how many of us can actually get on that Main Stage?
To answer the original question, must we first clarify what constitutes a disabled artiste. Who is Spasticus? And is that authenticity about impairment and the label of Disabled? Or purely the rawness inside? Does celebrating Spasticus somehow contradict Inclusion because it’s such a rabble-rousing, 2-fingers-up-to- the-Norms, Crip Anthem? Those lyrics don’t doff a cap to Political Correctness. Seems to me Dury doffed to no-one.
I’m Spasticus. I’m Spasticus in a world of both Spasticci(?!) and Nons and I like it that way. Not assimilation or acceptance’. It’s not enough! I hope to be embraced for being Spasticus in this world just as I embrace those that aren’t... corny but true. When Spasticus gets Out in `Reasons’ it feels embracing. And never putting aside my Spasticus book of credentials, I want to be at The Big Gig with every-one. That’s the only Main Stage I want.``
I’m up to Glove Peel, in Jo Weldon’s Burlesque Handbook. The page is marked with a Sainsbury’s voucher for £3 off. Not very Glam’ but hopefully I will be! Jo from The School of Burlesque will be working with several of us Crip-Lovelies towards a performance at DaDaFest 2010 next month.
I’m envisioning shivering with cold & nerves semi-clad in the `Pool! Not unlike the first time I got my kit off for what was to be public viewing... a cold February morning back in Camden, there I was sitting on my hard fake-laminate (again not v. Glam’) flooring, under a light tent with photographer Larry Dunstan.
Larry admitted I was his first life-model, murmuring “takes a lot of trust” reassuringly as he carefully manoeuvred his way around me, with camera. With my pillow under my head and butterfly knickers (blimey I've linked back to the cocoon again!) on. I knew it was going to be alright! And it was. That was the weird thing.
The resulting photo was displayed as part of an exhibition called Notions of Beauty at the London School of Fashion. It was also included in a BBC3 programme, under the caption of ‘Unconventional Beauty.’ I now think of that photo as our interpretation of Manet’s Olympia... but what’s it all about? Why do these things? Why are all us Cripplys suddenly un-dressing very publicly? Are PA-Users out to make a performance art from our need for assistance with clothes?!
I asked myself that question on said cold Feb’ morning and I’m asking it again now, approaching what’s bound to be an equally cold November one. The most obvious answer is “because some-one asked me to!” Begging the equally obvious “Well if some-asked you to stick your head in the proverbial gas oven…?” Answer to the 2nd is No (most days!) but there is some truth in my answering Yes to the first.
I could be Right On here and say it’s empowering, I’m doing it for myself, subverting the exploitation of Freaks by taking control etc. But… umm… If I’m honest I don’t think it is those things. Not that clearly defined anyway. Perhaps it's just that I quite like the idea of people wanting to see me naked and hoping they’ll like my body as it is! Curious & different, yes. A little E.T.-like (without extending neck!) perhaps, but indisputably and uniquely MINE.
I’ve never been one for covering up my curves in unusual places because I was never `covered up’ like that as a child. When I played Coral in Peeling for Graeae, it was such a relief when I finally got down to my Undies! That’s not to say I don’t have hang-ups about my appearance. Or that I’m not intimidated by the Big Women depicted in the Burlesque Handbook.
I’d give a lot to refine my Partridge beak-of-a-nose and my bum quite often looks big but.. I do quite like my body. It’s the only one I have and it’s got me this far. I remember looking at the photos Larry took in not much less than amazement.
Seeing my back and how squiggley it is, looks impossible that I
manage’ with it. It’s SO not-straight-as-itshould’-be... yet I do. Every day! Not `sexy’ - but Nice, maybe not nearly enough people get to see my Bod!?! I felt the photos truly portrayed my female form. Very small in places, quite squished down and in... but a real woman.
Maybe now I just want to show off that unconventional beauty a little bit more... even in chilly November! Just remind me then, that I said this... ;-)
Ah, that difficult second blog; expectations to live up to, reputation to safe-guard, the angst, dead-lines.. Or not as the case may be!
Last week was quite momentous, not least because it was a good friends 50th Birthday celebrations. Lets face it, if nothing has managed to kill us Cripplys off by that age - it’s an achievement in itself!
I also weathered three days in a caravan in Hastings and got caught up in a Pirate Parade - 6000 of em! All trying to break the World Book of Records for the number of Pirates’ in one place! Qualification apparel as a pirate, consisted of both a hat and a gun (pirates don’t go in for political correctness!), although mostly there just seemed to be loads of inflatable parrots stuck to shoulders!
Was also the week I finally ran away to join Cirque Nova and was COCOONED! In reality I got driven to a resource centre in Essex but still with the pirates “Aa-aargh!” ringing in my ears... makes a change from tinnitus! I went with appropriate sense of adventure. I’m still very excited / traumatised by this... circus I mean, as opposed to pirates and / or parrots! They were really quite friendly!
For those of you who have not experienced the literally dizzying heights of Circus Skills, a cocoon is a lot like a hammock - or sling thing if you’re a hoist user! The idea is that you sit / stand / somehow stay in and manipulate cocoon whilst it’s suspended off the ground, spinning at your preference! Depending on how physically `strong’ you are, you can then do all sorts, hang from it, twirl etc. More Cripply-friendly than Silks, your body is supported and held as much as you may need a la cocoon!
At first I just lay in it, slightly hysterical having just been lifted off the ground via my arm and leg by a Frenchman (not a pirate!) and me, giggling nervously due to a lad with challenging behaviour who had taken a liking to my power-chair (once I was out of it, thank-frig) and was trying to board it - definitely a pirate at heart!
Next I tried sitting up but my legs got squished too tightly against the cocoon’s fabric, so I had to lay down again. Having spun a few times and not thrown up, I ventured to get my feet out the open side and then my legs below the knees.
Then, abley assisted by someone’s mum (mothers - where would we be without them?!) I finally managed to `sit’ in the cocoon, being supported from behind as I can’t lift my head, myself. I FELT LIKE A PARALYMPIAN! ;-) Actually, I’ve no idea what a Paralympian feels like - or particularly want to know! But I did feel pretty good, half sitting there in the air, some sort of little-winged butterfly emerging from her wrappings. So I'm going back this week for another metamorphosis!
Sophie Partridge takes a look at some images from the Royal College of Physicians' Museum collection
Been a busy rabbit lately. Last Tuesday, attended the Royal College of Physicians’ Rethinking Disability Project Focus Group at Shape. The aim of it was to look at some of the medical illustrations in their archive and talk about what the images say about disabled people. Our discussions are to be part of an exhibition doing the rounds early next year.
The blurb participants were sent told us we would be interviewed and also photographed, with a prop and/ or costume if we so wished! The idea being that our images would be added to the archive of past and present ‘Cripplys’. I tried to bring things that were the `essence’ of me, ahem. I restrained myself from taking in my kettle-tipper but couldn’t resist my pink hoody, piggy mug (with my name on no less!) and stick-thing with manky bit of blue-tack on the end. Quite what these items say about me is probably best left un-said!
We then set about focussing on what the images set before us said’ about the subjects. All the pictures were high quality illustrations and we were split into groups with a set of prints each. Not sure if our individual impairments influenced the group we were allotted, but I had three small peeps and one parasitic twin’ in mine?!
My initial reaction to the first portrait - a Mr. Wybrand Lolkes in 1822, allegedly 2”1’ - was “there’s no way that bloke is so small. He’s loads bigger than me!” (For the record, I’m officially 2”11). This led to a discussion on the myths we perpetuate about ourselves. Or allow to be perpetuated. More than that tho, was my mix bag of emotions on seeing him and the other
As a young child, I knew I was never going to grow Up a lot. But because I didn’t know any small adults, I found it almost impossible to imagine myself in a future. Yet they were out there, I just had to keep living to find them. And back in the 19th century Wybrand and the like, were out there doing their stuff. Apparently these famed disabled people of their time, travelled further and widely, compared to the Non’s of their day. But where were the small women I wonder?!
Matey Wybrand had jacked in his trade as a jeweller, because more money could be made exhibiting himself as a short person. Can’t help thinking that’s become my trade - one way or another! Somehow I had a sense of relief seeing these peeps, knowing generations had gone before, living in a world without any model of disability. Or even disability as a term of reference!
Viewing and listening wasn’t always easy. We were told how our second short gent - John Worrenberg of Switzerland - drowned in a box in which he was carried on and off boats on his travels after an `unfortunate accident’!?! Then came the drawing of John Porro from Genoa and his twin, Mathew. There wasn’t much of Mathew; some plaited hair and his head turned inwards towards John’s stomach to which he‘s attached, teeth showing. For a minute I was there in that room in a pub long ago, seeing John and Mathew; perhaps even being Mathew, not knowing how I thought I felt. Pity? Worry and sadness certainly, for both their plights. Negative assumptions? Mathew is rested on a small table in the picture, John’s hand on his back. I don’t know if the gesture is protective. John looks away…
In the afternoon comes the Crème De La Crème, in the condensed form of Matthew Buchinger from Germany, complete with fleshy processes (doctors speak for little fingers!). This is a beautifully drawn self-portrait of Herr Buchinger, bordered with intricate patterns and text loudly blowing his own trumpet.
This Matthew advertises his many talents, including dancing the Scottish Horn-pipe; fairly challenging I’d have thought, considering he doesn’t seem to have much in the way of legs! He sits there immaculately dressed on a sumptuous cushion.
Make no mistake, this appears to be a portrait of a proud man. Somehow on seeing this, my heart lifts. Whilst other babies born with such full-on impairments at that time, were “left in buckets under the bed” there he was, doing his thing.
Am I wrong to surmise that Buchinger had been loved and cherished as a child with ‘fleshy bits’ (not `in spite of his disability' bollocks!) in order to become the adult man he became? The group came to a close and I left with a brimming bag of emotions.