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Kaite O’Reilly with Paralympian hopefuls Steve Judge and  Suzannah Rockett-Coughlan at Sheffield Hallam University.

I started this blog last year as I wanted to write about the varied processes I might experience as a writer/dramaturg/co-creator working on three vastly differing productions over 2012. It was my plan to reflect on my experiences in ‘real time’ in research, rewrites, and in rehearsals, as the work grew and developed.

Part of this project was in response to the questions I’m often been asked by those I teach and mentor about the process of ‘being a playwright’.  My answer has always been ‘it depends’ – for I believe there is no one process, and my hope with writing the blog is to reveal some of the many processes writers and makers of live performance may encounter.

I’m currently at the end of the second week of rehearsals with Chol/Sheffield Theatres co-production of LeanerFasterStronger, a Cultural Olympiad project, reflecting on elite sport and the ethics and issues around human enhancement and sports science. It has been a research-heavy project, reading books and academic essays, being in residence at Sheffield Hallam University’s Centre for Sports Engineering Research, and interviewing former athletes who have competed at international level.

I’ve often wondered when the research will stop, for the issues are so current, especially with the Olympics and Paralympics fast approaching. Almost every day in rehearsals one of the company will pull out a story relevant to the play that was in that morning’s newspaper, or reported on television:  Themes of corruption, of sacrifice, of cheating or playing fair; advances in technology and bio-engineering; sportspeople breaking records, or collapsing and dying owing to the extreme rigour and demands of the sport.

Never before have I been involved in a project which is so current and ‘now’, which brings with it a responsibility. Although what we are embarking on is fictional and looking to the future, posing the central question of ‘How far would you go to be the best?’, the work needs to be credible, rooted in ‘truth’. Several events this past week have enabled me to check out my ideas with athletes competing at the highest level, and these conversations have impacted on the final revisions of the script. I feel astonishingly fortunate that these opportunities have come to me, and especially so mid-rehearsal. I never expected part of my job as a playwright would involve spending time with Paralympians and Olympians – nor that the final changes to a script would occur so close to production.

After a Paralympics panel event organised by Sheffield Hallam University and Radio Sheffield, I spoke at length with fencers Suzanna Rockett-Coughlan and Craig McCann, who were nervously waiting to discover whether they had been selected for 2012; and  2016  Paratriathlete hopeful Steve Judge. All talked about the necessity – and challenges – of keeping a good family/training balance, and the pleasures and trevails of competing at such a level.

Finding the human aspect, the emotional drama at the heart of sport has been central to my writing of the script. So much coverage of elite athletes focus on their super-ability and dedication; even the panel event that evening, introduced by the Chair of the British Paralympics Association, Tim Reddish, focused on the Paralympians as being inspirational, over-coming so many obstacles. That may be so and, sincerely, more power to them, but as a disabled woman I’m tired of the usual representations of people with impairments as either inspirational ‘heroes’, or the tragic but brave. To cut through this and connect, person to person, and share ideas and anecdotes, to talk about life and passion and winning or losing was phenomenal, and I am so grateful to the athletes for the insight they gave me into the beating human heart behind the high-pressured business of sport.

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Cutting Edge 2012: Behind Athletics, the English Institute of Sport.

Later that week, it was the turn of Olympian Roger Black, top sports scientist Professor Steve Haake,  Professor Chris Cooper, an expert in the physiology of top athletes, and Dr Rob Harle, a lead researcher in the development of innovative video and body sensor technologies to aid the training of both novice and elite athletes.

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Steve Haake, volunteer athlete, and Roger Black

Cutting Edge 2012, at the English Institute of Sport, featured live athletics demonstrations and my own advisor, Dr David James, leading an interactive  survey on how far research and new technologies should be used in the quest to win gold. Given the subject of my play – How far would you go to be the best? – it felt as though the event was especially organised for me and the whole LFS company who attended.

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Olympic Silver medalist Roger Black answering LFS actor Morven Macbeth’s research question. The English Institute of Sport.

One of the actors, Morven Macbeth, asked a question pertinent to our research and garnered a great response from Roger Black:

“Sport is definitely an industry, there’s no doubt about that, and the Olympics is a massive business, we know that, but for the athlete – you’re still the young kid who had the dream; you’re still one of the lucky ones who happened to have a gift for sport… I may be naive, but I still believe, when I watch the Olympics, the vast majority of the athletes we’re watching are clean, and are doing it for the right reasons, pushing themselves, having a dream, and trying to fill that potential. I can say that, because I did it….But there are many people who absolutely believe you can’t win a medal without taking drugs. And I know that’s not true.”

Further responses touched on the notion of ‘the spirit’ and ‘the virtue’ of sport – and how one of the ‘rules’ of sport is to ‘uphold the spirit of sport’ – a circular argument – and these rules or tasks we set ourselves are often arbitrary.

Given that one of the themes of the script has been ‘Sport tests the limits of what humans can do’, this comment, combined with the developments in bio and genetic engineering, gave me much food for thought. Fuelled by these interventions and provocations during the week, I locked myself into my hotel room over the weekend and finished the script.

I worked with Sophie back in 2002 on the original stage and radio productions of my play, peeling with Graeae Theatre Company, and some years later as dramaturg on one of her early forays into playwriting.  Sophie is always interesting and well worth a look.

Please go to:

http://curiousfilms.co.uk/hangups.html

After Ever After

Publisher: Scholastic

ISBN: 978-0439837088

Genre: Realistic Fiction

Reading/Interest Level: 11 and up because of mature themes around cancer survival, but no racy content

Awards: Schneider Family Award

I discovered this book shortly after I discovered the Schneider Family Award.  This award recognizes children’s books that accurately portray a disability experience.  Unlike some some awards where I find myself asking, “What were they thinking?!” I have found that every single Schneider Family Award honored book is fantastic.  For example, I think everyone should read Jerk, California by Jonathan Friesen.  It is a little old for tweens, but he gives such insight into the experience of having Tourettes Syndrome that I feel like a better person for having read it.

While, After Ever After, is a totally different story, it has the same quality of expanding your mind to better understand what it is like to be different.  In this case Jeffrey is a cancer survivor.  His leukemia is cured, but the side effects of the treatment linger.  When he was diagnosed with leukemia he was a math prodigy, but the chemotherapy damaged his cognitive ability and now he is faced with the daunting task of passing the 8th grade proficiency test if he wants to go on to high school.

The biggest problem with this book is that its title, cover, and plot synopsis do nothing to grab tweens and convince them to read it.  I had to bribe my daughter to read it, and she happily reads everything.  However, once she picked it up, she read it through in one sitting.  Jordan Sonnenblick has a pitch-perfect tween boy voice, as exemplified by this excerpt:

[That] had to be the cheesiest sentence I’d ever read in my life.  It was a cheesy cheeseball, covered with Cheez Whiz and served on a bed of Cheez-Its.  With a side of queso.

In addition, it has a full on revolt against testing – something that both kids and teachers would love to read about.  But, somehow this books still gets passed over again and again.  For those who do pick it up, they are in for a treat.

Some other middle-reader Schneider Family Award winners are; Rules by Cynthia Lord, A Mango Shaped Space by Wendy Mass, Things Not Seen by Andrew Clements, and Waiting for Normal by Leslie Connor.

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Cover of 100 Houses, written and illustrated by Colin Hambrook.

I’m deep in rehearsals with The Llanarth Group on The Echo Chamber, still writing and sorting the dramaturgy, so have little time to write – but I wanted to share an email exchange I had with Colin Hambrook, writer and illustrator of 100 Houses:

KOR: Can you tell me a little about your your poetry – when you started, what the the poetry means for you, what your  intentions may be, and so on….

CH: Writing poetry in one form or another is something I’ve always done. Originally my preoccupation was with songwriting and letter writing – playing with words as a form of expression. I grew up during the late seventies and was smitten by the intelligence of much of the lyric-writing by punk artists like Poly Styrene, TV Smith and Siouxsie Sioux to name a few. In amongst the intensity and rawness of the sound, they wrote about alienation and otherness with a wit and an insight that was life-saving. I knew a lot of the songs by heart and singing (as well as writing and drawing) has always been an important diversion during times of psychosis when I can’t trust what is going on in my head. Not that I believe in the creativity/ madness correlation by any stretch. The writing that happens during episodes of psychosis is largely rubbish, although there are sometimes kernels of rich imagery that can be drawn upon as a basis for something else.

Since schooldays I have always had periods of absorbing ‘serious’ poetry, as well as music, but the words have to connect at an emotional level; there has to be something that strikes as truth, for it to mean anything. In the way that I write, as in much of my drawing, I have often had a tendency towards being too ‘flowery’; albeit with a gothic sensibility. In the drawing I like to create images that change and shift according to the mood of the viewer and their physical distance from the artwork. It took me a long time to realise that the same approach doesn’t work with poetry.

I like words; the way they sound in your head and roll off your tongue. I love the way that words can often imitate how actions and things ‘feel’. But it was the decision to learn to write in a way that communicated beyond myself that was the spur for going beyond the defensiveness that it is so easy to fall into as a poet. When people – in general – think of learning to paint they turn to watercolour. Similarly when they think of learning to write they turn to poetry. Both carry with them the peculiar misunderstanding that, respectively, they are the easiest forms of expression, when in fact they are both the most demanding.

It took me a long time to realise that I had to learn to keep the imagery in service to reality. At the same time I began to see the significance in showing rather than telling. I think it was a workshop with Pascale Petit when I first came across the notion of “learning to kill your darlings” ie deleting imagery and metaphor when it serves no real purpose other than to “sound good.” I still write as a way of explaining myself to myself, but I have to experience a certain intake of breathe or sense of satisfaction, before I can think of a poem as achieving anything approaching an intention.

I was fortunate to get a place at Dartington College of Arts in the late 1980s and early 1990s. They had an approach to teaching fine art that focussed on the wider social context of the artwork; its imagery and its purpose. The usual art historical approach taught in art schools concentrates on the idea of the artist and their hierarchical position within a narrow definition of what constitutes ‘art’, rather than creativity as a raw and essential ingredient of life.

What about the relationship between words and image?

CH: There is something about the combination of image and text that is indelibly imprinted on my imagination. I have a strong capacity for thinking in images. But the stories behind the pictures have to be expressed in words if they are to make any sense. At college I began a series of paintings and writing that were made in response to each other. I kept dream diaries which I story-boarded and pared down to specific images, which were then turned into paintings and prints. I produced an exhibition called ‘Dreams of the Absurd’ which was shown as a whole and in part at a dozen or more art galleries during the 1990s. During the same period I was very involved with Survivors’ Poetry. Being co-editor of their second anthology ‘Under the Asylum Tree’, was a brilliant experience. I learnt a lot about giving a sense of order to a collection and planning book production.

I went on to become more fully absorbed in editing at the same time as I became immersed in the disability arts movement. I had that sense of finding the community that I’d been looking for a long time and became inspired and passionate about disability art because it is about tangible experience, and substance rather than form for the sake of itself.

Can you contextualise how this project came about?

CH: My poetry got largely left behind until I applied for an opportunity that came up as a Dada-South commission – as part of Accentuate. Titled Up-Stream, they were looking for creatives who were going to be able to use the opportunity as a stepping stone towards upping their game as a professional practitioner. It has been the spur to get me back into my stride as a poet. 100 Houses came out of a desire to learn to etch and craft previous material. In the last six months the writing has got stronger and I’ve developed more confidence in putting the work in a public arena.

What advice would you give to other writers/artists/creatives?

CH: I think the most important thing in learning to write is finding people you can trust to give you a balanced critique of the merits and demerits of your work. It’s a bit of a knife edge, when you are putting your soul on display. If you are not naturally thick-skinned and have a tendency to take things personally, it can take an enormous leap to learn to differentiate between good and bad judgement. But you can only learn and develop your craft as a writer, by making mistakes. So finding someone skilled enough to tell you why they think something could be better is extremely important. You then have to weigh up whether their reasons match your intention. Even if they they have misunderstood or are on a different wavelength, but can clearly describe why they don’t like a thing in a way you can appreciate, then it is important to realise that as an act of generosity.

Further information on 100 Houses can be found at:

http://www.amazon.co.uk/100-Houses-Colin-Hambrook/dp/0956891500

http://100houses.co.uk/poem-02.htm

listen to mp3 of ON HEALING:

http://100houses.co.uk/sound/on-healing-poem.mp3

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Cast of IN WATER I’M WEIGHTLESS: David Toole, Sophie Stone, Karina Jones, Mandy Colleran, Mat Fraser, Nick Philips. National Theatre Wales development week, November 2011.

Cardiff, November 2011: I’m in a studio with a group of outstanding performers, some internationally renowned, others forging reputations as ‘people to watch’. Also present is John McGrath, artistic director of National Theatre Wales, choreographer/movement director Nigel Charnock, designer Paul Clay, and emerging director Sara Beer. We’re here to develop In Water I’m Weightless and I can’t quite believe it’s happening.

The project is a long time coming and is only possible because of my Unlimited Commissions from the Cultural Olympiad, funded by the National Lottery through the Olympic Lottery Distributor, delivered in partnership between London 2012, Arts Council England, the Scottish Arts Council, Arts Council of Wales, Arts Council of Northern Ireland and the British Council.
 These awards enabled me to launch The ‘d’ Monologues, scripts written specifically for Deaf and disabled actors, informed and inspired by interviews and interactions with people from all over the UK.

I’ve talked to disabled and Deaf friends, strangers, and colleagues about sex and complex interpersonal relationships, childhood ambitions and adult careers, divorce and promiscuity, favourite recipes and aphrodisiacs, societal labels and self-identification. We’ve spoken about sub- or counter-cultures and the mainstream, prejudices and preconceptions, theatres where performance happen and theatres where surgery is performed. We’ve talked of discrimination, both positive and negative, of love and loathing, fertility and being sterile, of what it is to be human and how to be truly alive. And this stimuli has prompted several projects and attracted National Theatre Wales’s creativity and openness to engage.

In Water I’m Weightless will be NTW’s twentieth production, produced at the Wales Millennium Centre in July 2012, setting an important precedent about which practitioners and what content are produced on a national platform. It’s rare for the material which makes up In Water I’m Weightless to reach the ‘mainstream’ – and it is even more rare for such a high profile transcultural experiment to happen.

I write this with confidence as I’m a fellow of an International Research Centre connected to the Freie Universität Berlin’s Theatre Department, which investigates the interweaving of performance cultures and of cultures in performance in the broadest sense. My research through practice focuses on what I call ‘Alternative Dramaturgies Informed by a Deaf and disability Perspective’, with particular reference to disability arts and culture and its relationship(s) to dominant, or mainstream culture(s).

As a practitioner, I have one foot in the ‘mainstream’ and one in disability arts – and previously it was a case of never the two shall meet… It has taken several decades to reach this position where I can openly fold disability content into a ‘mainstream’ project without having to find clever ways of hiding it and my intentions, or endlessly having to justify this way of being, or why I might want to write about human difference whilst challenging established parameters of ‘normality’.

There’s often an assumption that this kind of work has no place in the ‘mainstream’ – or it will be hectoring, or politically correct. Personally, I’m far more interested in the provocatively politically incorrect – and am sure that the combination of NTW’s creative team and the witty, subversive performers will ensure In Water… is anything but ‘worthy’.

The first part of this post began reviewing the year and questioning whether anything has changed in the relationship between disability arts and culture and majority culture. Given my forthcoming production with NTW, and  other developments in 2011 in Scotland, I’m encouraged and given hope for the future.

Both Robert Softley and Claire Cunningham have been developing projects in 2011 with National Theatre Scotland.

Robert’s Girl X was an exploration of ethical issues surrounding the rights of an eleven year girl with cerebral palsy, who had the mental age of a five month old infant. Her mother sought a hysterectomy for Girl X, believing the onset of puberty would only bring additional, and unnecessary distress to her. The doctors also felt such controversial surgery might improve her quality of life. The play, produced in Spring of 2011 and written by Robert Softley and Bart Capelle, asked questions such as:  ‘When do private matters become public concern? Is the majority always right? Do wheelchair users know better? Where will it all end?

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In contrast Claire Cunningham’s recent dance theatre work explored her twenty year relationship with her crutches – and the (im)possibility of creating her ideal man from these objects, – what she knows best. Ménage à Trois  was ‘a hauntingly beautiful study of love, obsession, loneliness and manipulation’ and, like In Water I’m Weightless, emerged from an Unlimited Commission.

I’m a big fan of both Claire and Robbie’s work, so am delighted at this development. It’s incredibly heartening that the National Theatres of Wales and Scotland are making unprecedented approaches towards disability artists and content in their commissioning and programming. But it’s also clear how central Unlimited and the Cultural Olympiad have been in helping make these changes happen.

Unlimited describes itself as ‘a project celebrating disability, arts, culture and sport on an unprecedented scale as part of the London 2012 Cultural Olympiad.’

I am writing on January 1st 2012. It will be fascinating to see on January 1st 2013 quite how successful that influence will have been – how far and deep its touch…. For the moment, I am hopeful.

Happy 2012, all. Hope it is creative and provocative and stimulating and joyful.

x

For an interview between Vicky Featherstone, artistic director of National Theatre Scotland, and Robert Softley on Girl X, go to:

http://www.nationaltheatrescotland.com/content/default.asp?page=s717

For further details on my research project with International Research Centre Interweaving Performance Cultures in Berlin, go to:

http://www.geisteswissenschaften.fu-berlin.de/v/verflechtungen/People/Fellows/Fellows_2010_2011/Kaite_O_Reilly/index.html

Copyright Kaite O’Reilly 1/1/12.

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The sublime Mandy Colleran in rehearsals of In Water I’m Weightless, National Theatre Wales, November 2011. All Photos: KO’R.

I began this blog back in August 2011 after I realised that 2012 would bring an embarrassment of riches production-wise. As the forthcoming work is diverse in aesthetic, process and content, I felt much might be learnt, and writing a blog might help externalise my learning, publicise the work and document the process(es).

For they are process(es)… Devising, playwriting, co-creating, collaborative montaging… I’m excited by what 2012 will bring, and the diversity both of the work and the creative approaches I’ll be involved with. It challenges that stereotype of the solo dramatist writing away, misunderstood and alone, in her garret – and the notion that there is only one way of writing plays/drama/performance work (delete as applicable).

But before moving forwards into 2012, and The Echo Chamber, the first project (which begins full rehearsals on December 28th 2011 and will be written about, here), I think it expedient to look back over the year at some of the projects I’ve made and the people I have collaborated with, particularly within disability arts and culture, and ask have we moved on? Has anything actually changed?

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Ali Briggs, in rehearsals of Forest Forge’s production of ‘peeling’, directed by Kirstie Davies, March 2011.

‘peeling’, first produced by Graeae Theatre Company and designed and directed by Jenny Sealey in 2002, had a revival in Forest Forge’s production, touring rurally. The director, Kirstie Davies, had been keen to find an opportunity to produce the script for some time and it was fascinating to return to an old script and see what had stood the test of time, what required updating, what was no longer relevant…

Perhaps it’s a sign of how far we still have to go in perceiving disabled and Deaf people as equal citizens and not ‘other’, but we discovered the cultural and socio-political aspects parodied or challenged in the play were still as relevant in 2011 as 2002. The only changes to the script I made were updating celebrity names. The stories in the play of being patronised, feared, or discriminated against still held – and the off-duty conversations we had in the green room about the challenges disabled and Deaf women face when working in the creative industries were as familiar and tiresome as they had been first time round, at the beginning of this Millennium.

Photocall: ‘peeling’ with Kiruna Stamell, Nicola Miles-Wildin and Ali Briggs.

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As I wrote during rehearsals in February 2011:

Ali, Nickie, and Kiruna are powerful, comical, and poignant… I am congratulating Kirstie Davis, artistic director of Forest Forge, on her superb casting and her liberating, inclusive attitude – for it is still extremely rare. Sadly, in my twenty plus years of professional experience in theatre, I have largely found a reluctance for companies to cast disabled and Deaf actors, even in parts written specifically for them. Perhaps this is based on fear, or ignorance, or uninformed preconceptions – things are certainly changing and improving – but we certainly need more like Kirstie in the industry.

I am also extremely excited by ‘peeling’s rural tour – bringing this work and this company to village halls and community centres. The fact large famous London theatres are still casting hearing, non-signing actors in Deaf, signing parts only highlights how quietly radical Forest Forge’s work is….   http://www.forestforge.co.uk/posts/45

This radical aspect to Kirstie’s programming was also appreciated by Mark Courtice writing about the production in April 2011 in reviewsgate:

Forest Forge, in taking [peeling] to the arts centres and village halls of Hampshire and Wiltshire,  demonstrate the sort of courage and enterprise that make the recent Arts Council decision to cut their grant seem more than usually incomprehensible. 

http://www.reviewsgate.com/index.phpname=News&file=article&sid=5563

Here is one area where I feel there has been a change: the 2011 reviews of ‘peeling’ were not as toe-curlingly insensitive or offensive as some had been, the first time round. Perhaps the influence of the Medical Model has begun to wane, but here were no lingering descriptions of the performers’ bodies or impairments, nor morbid fascination with physical difference. Thankfully, there was no polarity between ‘handicaps’ and ‘real people’ as there had been in The independent in 2002.

http://www.thestage.co.uk/reviews/review.php/31697/peeling

http://www.salisburyjournal.co.uk/leisure/entertainments/8946314.Sensitively_appealing/

And so from a remounting of old workmade new, to a new piece so new it has not had a production yet:

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Christopher Fitzsimmonds, Kiruna Stamell and Peader Kirk in workshop, ‘Your Tongue; My Lips’ , June 2011. 

‘Your Tongue, My Lips’ is work in progress exploring disability and sexuality, and part of my Unlimited Commission from LOCOG and the Cultural Olympiad, to develop new work inspired by disability experience. In June 2011 I had a residency at Chapter Arts Centre in Cardiff, working with director Peader Kirk and performers Mat Fraser, Kiruna Stamell, Christopher Fitzsimmonds, Sara Beer, Tom Wentworth, Ben Owen Jones and Carri Munn.

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Mat Fraser

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I feel there has been a shift in many ways towards some of the work coming out of disability arts and culture – but it isn’t necessarily from the mainstream, but from what used to be snootily or suspiciously called ‘the avant-garde’.  In many contexts disability arts and culture has been viewed as either therapy or amateur expression – I have been wrestling with this for more years than I care to count. It comes then as no real surprise that many of the allies to my crip culture work have been artists working experimentally themselves, or gate-keepers to institutions or venues which value experimentation. Such was my experience when working with Peader and the actors at Chapter, and my interactions with James Tyson, former programmer of the venue, and Richard Huw Morgan of Good Cop Bad Cop, and Pitch, Radio Cardiff,  98.7FM.  

For a lengthy interview with the performers and me about this work, please follow the link below to Pitch,  ’a cool arts magazine, but on-air’ (The Guardian’).

http://www.culturecolony.com/videos?id=6464

It is an archive recording of programme 6 and the interview between Richard and I starts 31.58 minutes in.

In the second part of this blog, I will write about my work in the latter part of this year, working more in the ‘mainstream’.

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Delighted to see In Water I’m Weightless, my Unlimited Commission to be produced by National Theatre Wales in 2012, was included in the preview guide to London 2012. ‘Britain’s biggest ever cultural festival’ over the weekend.

I quote from the festival supplement, written by a journalist:

Stories that Come to Life

A character hears sound for the first time, while the audience reads sign language in back-projected subtitles in a powerful experimental work that treats disability as entirely normal, exploring the endless possibilities created by “human difference.” Writer Kaite O’Reilly, herself visually disabled, spent three years talking to deaf and disabled people, creating a collage of fictional monologues that is poetic, moving, challenging and often very funny. Six of Britain’s leading disabled actors, often performing outside their own disabilities, take part in a dynamic, expressonistic staging that contrasts the warmth and intimacy of stories told direct to the audience with dance and live projections.

In Water I’m Weightless Wales Millennium Centre, Cardiff, July 26-August 4 2012.

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Wendy Bryant

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This is the press release I received today about an unique and important project:

‘Neglected Voices’ published by Disability Arts Online

‘”Neglected Voices” is one of the best creative responses to our social exclusion I have seen for a long time.’

Baroness Campbell of Surbiton

Disability Arts Online has just published ‘Neglected Voices’, a set of four cycles of transcription poems about disabled people’s experience created by writer Allan Sutherland.

The project was produced during his one-year tenure as poet-in-residence at the Centre for Citizen Participation, Brunel University, West London.

Sutherland, an award-winning disabled writer, created ‘Neglected Voices’ by carrying out life history interviews with four disabled people, then editing and shaping them to create poems, using the skills he learned during his 15 years as a radio and television scriptwriter.

“These cycles of poems tell the life stories of four disabled people, drawn from the range of people involved in the Centre for Citizen Participation,” explains Allan.

“They have important and interesting stories to tell. But then, in my experience, so do all disabled people.”

“Neglected Voices” gives these four people the opportunity to tell their own stories.

“We get looked at a lot,” Allan says, “and talked about a great deal. We get poked and prodded and have crass jokes made about us, but we don’t get listened to very much.  This does not mean that we have nothing to say.”

‘Allan Sutherland’s residency as a disabled poet under the auspices of the Leverhulme Trust has given real power to our work’ says Peter Beresford, director of the Centre for Citizen Participation.  ‘It has highlighted the creative role that the Arts can play in a university context.  It has also generated a new inclusive art form.’

The work has evoked a strong response from disabled artists and activists. ‘“Neglected Voices” represents the lives of a small group of disabled people in a way that their voices, personalities and experiences ring from the page,’ says disabled film-maker Liz Crow.  ‘Sutherland is developing a very interesting new narrative approach.  This is an immensely valuable contribution to recording the lives of marginalised communities.’

“Neglected Voices” is published on Disability Arts Online

http://www.disabilityartsonline.org.uk/Neglected-Voices

Notes

Allan Sutherland has for thirty years been exploring ways of making heard the voices of disabled people, including stand-up comedy, performance poetry, radio and television scriptwriting and journalism.  His book ‘Disabled We Stand’ (1981) helped many people to identify as disabled.  He has worked for The Guardian, Guardian Online, ‘EastEnders’, The Observer, Time Out, Sight and Sound, Disability Now, Disability Arts in London and Disability Arts Online.

His residency at the The Centre for Citizen Participation at Brunel University, West London was funded by the Leverhulme Trust.

The Centre for Citizen Participation at Brunel University, West London, is a research centre which has a particular commitment to user-led research and to the involvement of service users and the subjects of social and public policy in research and policy development.

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Kiruna Stamell and Ali Briggs in Forest Forge’s production of ‘peeling’, directed by Kirstie Davies, Spring 2011. Photograph by Lucy Sewell.

Some years ago I received a Creative Wales Major Award from Arts Council Wales, to begin a project I called The ‘d’ Monologues – short dramatic solos written specifically for Deaf and disabled performers. There is a dearth of plays with disabled characters, and when these are produced, the parts are invariably played by non-disabled or  hearing actors. Those who know me and my play peeling will know I’m not a fan of this kind of casting. As one of the characters says in peeling, a play all about performance: ‘Cripping up is the twenty-first century answer to blacking up.’

The Western theatrical canon is full of disabled characters: From the pathos of the blinded Oedipus to the personification of evil in Richard III, the impaired body has often been used as a metaphor for the human condition. But seldom have the plays been written from a disability perspective, or performed by disabled actors. This was the impetus for my writing peeling in 2002 for Graeae Theatre. I wanted to write an edgy, inventive, and humorous play specifically for Deaf and disabled actors, which used Sign performance (theatricalised British Sign Language), and reflected the experience of disabled and Deaf women. Unfortunately so often in the media, we are portrayed as the victim or the villain – the object of sympathy, or charity, or superhuman inspiration. In peeling I wanted to create women who were witty, sexy, complex human beings who made difficult decisions about their fertility and potential offspring; women whose lives didn’t necessarily differ so much from non-disabled, hearing women’s lives.

A triumph in its original production, directed and designed by Jenny Sealey, and remounted earlier this year by Kirstie Davies of Forest Forge, peeling garnered prizes alongside outstanding reviews and is now seen as a watershed moment in the relationship between disability arts and culture and the ‘mainstream’ media. It was arguably the first production written, directed and performed by disabled and Deaf practitioners to be reviewed widely and seriously by all national press. A similar response came from within the specialised disability press: ‘Disability art grows up’ was one heading. The play was – and remains – controversial in elements of its content, politics, and depiction of disabled and Deaf women – but also for my refusal for it be performed by anyone other than Deaf and disabled performers.

I find non-disabled actors impersonating people with physical or sensory impairments extremely problematic – akin to the now offensive ‘blacking up’ of white actors to play Othello. This is not me being overtly PC, simply my rejection of what that message implies – that there are no black or disabled actors good enough to play these parts and that Caucasian non-disabled actors will always do it better…

I remember when it was announced the first black performer was going to play Othello  at the RSC. If my memory serves me right, I was in my early teens at the time and horrified when this came up, presented as some kind of celebratory cutting-edge news item on the local television station. “What?!’ I remember thinking. ‘There hasn’t been a black performer playing that part until now?!’

Everyone interviewed seemed to be most relieved this prejudice had been finally put to bed and shook their heads over the onerously-held negative opinions of actors of colour in the past. There would be no more boot polish and burnt corks smelling out the dressing rooms of the RSC or the UK regional repertory theatres. Caucasian actors blacking up to play the Moor owing to their supposed superior acting skills, knowledge of the Bard and ‘his’ language no longer held sway… And I look forward to the time – in my lifespan, I hope – when a similar change occurs regarding disabled performers and characters with impairments, whether congenital or acquired.

In the meantime, I’ll grit my teeth when every Oscar-hopeful pulls off their studied gimp impersonation and offer resistance by writing what I hope are interesting and subversive parts for Deaf and disabled actors.

I’ve been writing plays with disabled protagonists for almost twenty years. Throughout that period I have heard the same argument from theatres and directors from both sides of the Atlantic: How will they cast it? Where will they get good, experienced, professional actors who identify as disabled or Deaf? They just don’t exist! The audience or critics or theatre cat won’t accept it! and yada yada in finitum blah de blah until fade…

These preconceptions are incorrect. There is a vast collection of talented, professional performers, theatre practitioners, and live artists – and the numbers are growing. An incredible amount has been done to change perceptions and open up opportunities for training and professional work since my acting debut with Graeae Theatre in 1987. There is an army of the great unsung who have worked tirelessly and continuously to raise the portcullis of fortress professional theatre in the UK and elsewhere – but this has also predominantly been our own actions, created or ignited within the disabled community, working with allies.

Bringing this talent and experience centre stage on major platforms has become something of an obsession, and I’ve spent the past four years developing several projects which now are coming to fruition – projects I’ll be writing about on this blog in coming months.

When I received my ACW Creative Wales Major Award back in 2008, I spent a year exploring the form of the dramatic monologue, seeing solo work in Europe and the US, meeting and being mentored by experts of the form, like Sara Zatz and Ping Chong Company in New York. I shadowed part of Ping Chong’s  Undesirable Elements Series, watching testimonial theatre in various school halls and community centres in Brooklyn, the participants/performers using their own autobiographies to address the experience  and reality of being disabled in NYC.

Throughout this period, I was writing monologues in a variety of styles and dramaturgies, informed and inspired by my interactions with Deaf and disabled people across Wales. Unlike Verbatim, or the testimonial theatre of Ping Chong Company, I chose not to use the actual stories I had been told, but used  these anecdotes and experiences as inspiration, and created fictional drama informed by these interactions.

At the end of the year, the experiment proved to be a success and worth persevering with. A script-in-hand sharing of early work at Unity Festival at the Wales Millennium Centre in Cardiff brought outstanding reviews and I later brought what I coined ‘The Cymru Crips’, a group of performers I’d been working with in South Wales – Sara Beer, Rosaleen Moriarty-Simmonds, Kay Jenkins and Macsen McKay – to The National Theatre Studio in London, for a further script-in-hand showing when I was there on attachment in 2009..

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Kay Jenkins, Macsen McKay, Rosaleen Moriarty-Simmonds, Sara Beer, Phillip Zarrilli, Kaite O’Reilly and Maggie Hampton at the National Theatre Studio 2009.

I was further encouraged by receiving an Unlimited Commission from the Cultural Olympiad, part of the celebrations to develop the project across the UK. But that is a further story…

Part of this blog originally appeared in: http://www.forestforge.co.uk/posts/45

http://www.kaiteoreilly.com/plays/peeling/index.htm

http://members.multimania.co.uk/graeae/productions/peeling/peeling.htm

http://www.amazon.co.uk/Peeling-Kaite-OReilly/dp/0571215947

http://www.artswales.org/what-we-do/funding/what-we-fund-in-wales/cultural-olympiad/unlimited/awards

http://press.artscouncil.org.uk/Resource-Library/The-Llanarth-Group-Wales-482.aspx

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Alan Martin and Kevin Edward Turner in the motion capture lab, Sheffield Hallam Sports Science Centre. Extraordinary Moves: research week.

all photographs by Kaite O’Reilly.

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‘Research is to see what everybody else has seen, and to think what nobody else has thought.”  Albert Szent-Gyorgyi. Hungarian biochemist and 1937 winner of the Nobel Prize for Medicine.

I’m in Canada, revising the next draft of LeanerFasterStronger, the Cultural Olympiad commission from Chol Theatre in a co-production with Sheffield Theatres. The project is part of Extraordinary Moves, a major strand of the imove programme, which celebrates and challenges the relationship between people and their moving bodies through a series of innovative arts projects across Yorkshire.

One of the processes I use when redrafting is to go back and revisit all the source material. I’ve found that when there is a ‘hole’ in a developed draft, or a problem to be solved, invariably the missing link is offered up somewhere in the research material and earlier drafts. So it is with delight I’m in the process of reviewing my documentation of our research week at Sheffield Hallam Sports Science Lab, organised by Susan Burns of Chol Theatre in partnership with XMoves co-producer Dr David James. I’m further aided in my revision by a documentary directed by Andy Duggan to be shown later this year at Leeds International Film Festival.

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‘Extraordinary moves celebrates human movement’, Laura Haughey said, introducing me to the motion capture lab, where performers, choreographers, dancers, directors, scientists and this writer spent a week exploring movement potential and our relationship to moving bodies.

My first introduction to sports science technology was through infra red cameras. ‘Dots’ applied to the joints and other parts of the body ‘captured’ the subject in space and reproduced the physical sequence on a computer screen as lines of movement. This in effect erased the human form, creating instead an arresting constellation of dots. When these were joined up, ‘stick’ men and women moved on the computer screen, clearly revealing how very different bodies move in space.

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Kiruna Stamell being ‘dotted up’ by Laura Haughey

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Some participants didn’t distinguish the avatar body as their own until they saw a recognisable movement trait, or an interaction with a cane, or what we coined the ‘magic carpet’ levitation provided by a unmarked moving wheelchair.

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Nadia caught between the many infra-red cameras.

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There has been a long cultural and linguistic practice of assigning meaning to the impaired body and I was particularly interested in discovering how this changed when the body was represented in such a different form. Part of my role was to facilitate discussion and reflection after the sessions, so I asked the politicised disabled performer/  dancers how they responded to this ‘new’ mode of representation of themselves.

‘I liked the experience of seeing a non-disabled version of myself’ Kiruna Stamell said. ‘It meant the movement could be analysed without social judgement of the body, without judgement of the politics… Just to see the pure movement! The judgement around my physicality is more about my physical relationship as a disabled woman to an environment I’m in, not a judgement on my body as a judgement on my body.’

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Participants included Sam Jacobs, Kiruna Stamell, Nadia Adame, Dan Edge, Nadia Clarke, Alan Ward, and Company Chameleon’s Anthony Nissen and Kevin Edward Turner.

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Other activity that week included a physical workshop led by Andrew Loretto, working with two disabled and two non-disabled dancers, working with high speed cameras to capture the subtle movements and interactions not seen by the naked eye.

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Nadia and Anthony exploring speed, status, and levels of engagement

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.’We’re interested in how people move, and what moves them’ Laura said t‘We’re interested in how people move, and what moves them’ Laura said to camera at the start of the day. What struck me was the speed and intensity of engagement –  the immediate and complex negotiations of equal bodies and space – the marked moments of tenderness, or of pure joy.

For further footage of this extraordinary research week, please view Andy Duggan’s award-nominated film at:

 http://www.yorkshiretelly.com/extraordinary-moves/

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(c) Kaite O’Reilly 11/10/11

Two disability culture books arrive in the post, and by long standing friends, allies, and/or cadres.

The first – and the focus of this blog – is an outstanding book of poetry from Jim Ferris, who I have admired since encountering his seminal collection The Hospital Poems in 2004.

“…Slouching Towards Guantanamo is kind of holy, more than a little Whitmanesque when Jim Ferris writes, “This is my body. Look if you like.” And so we do in these funny, lacerating poems, veering from pain to pain. They sing the body derelict, the body “merely” different. Intensely physical, surprisingly musical, capacious and elegiac at once, Slouching Towards Guantanamo is thrilling work, though things fall apart, as do we all…”

–Paul Guest, My Index of Slightly Horrifying Knowledge

Such reviews of the book make me long to leap straight in, but there is a pile of other books waiting to be reviewed first, and I know some of the poetry will already be familiar to me. As is the case for other poet friends, like Chris Kinsey, Jim is immensely generous with his work and has shared work in progress with me over the years.

One of the great achievements and attractions of Jim’s work in my opinion, is how each poem is seeped through in disability experience. If asked to identify work which is quintessentially crip culture, as well as retaining its own singularity and identity, I would immediately point to Jim Ferris’s work. His wry humour, his extraordinary communication skills, the knowledge of bone-pain from deep within the marrow and his ability to translate that into sublime language all – regardless of impairment or not – can understand is why he should be better known outside his native US.

In Slouching Towards Guantanamo, Jim Ferris continues to challenge the way we have all learned to think about disability and people with disabilities. These splendid poems navigate between the light touch of tender irony and the arresting perspective disabled bodies can offer our common understandings.

–Rosemarie Garland-Thomson, Staring: How We Look

I manage to see Jim once every couple of years, the last time in spring 2010 in the endless cornfields of Indianapolis. Some years before that, he attended a rehearsed reading of my play The Almond and the Seahorse, about survivors of TBI (Traumatic Brain Injury) as part of the Madison Rep Theatre New Writing Festival, and having a fellow crip in the audience added somewhat to my enjoyment of the ‘Q & A’ with the audience.

Afterwards, he intimated he had  experienced two plays simultaneously – the emotionally-charged mainstream play and the radical disability culture play. I agreed. I call The Almond and the Seahorse my Trojan horse. It is my most conventional script, a character-driven well-made play deliberately designed to appeal to mainstream theatres – a vehicle to be wheeled on to a mainstream stage – with disability politics in its belly.

Back in Wisconsin we discussed how we are sometimes working on several levels simultaneously – the work is layered, almost palimpsest. I find that there is a ‘secret’ code in some of my work – a sensibility, a perspective, a way of being in the world informed by my disability identity, which infiltrates and is communicated, at a subtextual level, to any fellow crips who encounter it. Perhaps this is the same for all minority groups, or sub-cultures, but it is one I feel intensely in my engagement with the disabled community.

Jim’s poetry epitomises the shift in perception which great work can achieve. As Terry Galloway (‘Mean Little deaf Queer’) coined it, when analysing Jim’s poem ‘Poem with disabilities’:

“This poem, like so many others in this heartfelt and expressive compilation, exhorts us, beguiles us, charms us; and suddenly, as we’re reading along–just as he promises– our “angle of vision jumps” and our “entrails aren’t where we left them.” A precise and eloquent unraveling of life’s knottier complexities.”

I give you Jim Ferris.

Poet of Cripples

Let me be a poet of cripples,
of hollow men and boys groping
to be whole, of girls limping toward
womanhood and women reaching back,
all slipping and falling toward the cavern
we carry within, our hidden void,
a place for each to become full, whole,
room of our own, space to grow in ways
unimaginable to the straight
and the narrow, the small and similar,
the poor, normal ones who do not know
their poverty. Look with care, look deep.
Know that you are a cripple too.
I sing for cripples; I sing for you.

(c) Jim Ferris

Reproduced from http://www.mainstreetrag.com/JFerris.html

Other resources for Jim Ferris on-line:

http://www.vsarts.org/x2275.xml

http://www.wordgathering.com/past_issues/issue2/essay/ferris.html

http://www.goodreads.com/book/show/1541556.The_Hospital_Poems

While it may not always sound like it in this blog – I am OK with having a disability.  I not interested in a cure.  I’m perfect the way I am.  The way I see it – is that God created people in his own image – that includes people with disabilities.  The notion that there is a perfect type of human being that we’re supposed to be goes against the facts.  No one fits that.  Honest.  No one does.  Everyone has issues and things to deal with in life.  That’s what life is – one thing after the other – some things we like and some we don’t.  It’s not personal – it’s just how life is.   Accepting that makes going through life easier and more fun.

So why do I let these people get to me?  I assume it’s because I have not accepted that life includes people with views about disability that I don’t like.  I want to change how they perceive disability – I want them to see it as a part of life – part of being a human.  Another thing for me to overcome.  To paraphrase a Zen concept: as long as I am willing to “overcome” – there will always be something to overcome.  That walk along the river is looking better and better!

I am on a committee set up to address disability issues.  It is structured so that a number of people with disabilities are on the committee and the chair is supposed to be a person with a disability.  I am the chair (no pun intended).  The vice-chair is a nondisabled white gentleman.

As the committee has progressed, many important matters are discussed first with the vice-chair rather than with me.  He’s viewed as the one with the answers.  I’m usually told about what transpired after the fact.

As a result I feel like a token – remember tokens are only in their positions because they have a particular characteristic, not because they have anything to contribute.  It seems to me that the chair ought to be someone who can perform the chair functions  not simply be in the position to fulfill the requirement of having a disability.   At least that is my view – to do otherwise is patronizing, stigmatizing, and just plain mean.

So now what?  I’ve had a couple talks with the vice-chair letting him know how I feel, I’ve vented to anyone who  would listen and I’m inserting myself when I can to take a lead in what is happening with the committee.  It seems as though I have to do more than others to demonstrate my ability to be the chair.  I have to overcome the perception that the chair is a token position and the real responsibility for the committee lies elsewhere.

I get tired of all this and I wonder as I seek a spiritual path whether it matters.  Do I set up these hurdles so I have something to overcome?  As a child, I learned to overcome, to work hard to regain muscles and abilities.  Has this become so ingrained that I look for opportunities to overcome?  Look for things that are wrong so I can “do” something?  Probably.  And frankly – I’m OK with being someone who overcomes.  It’s a nice identity.  Don’t you think?  But I think I need a little time out now and again – I’m going for a walk along the river.  It’s real pretty there and probably there won’t be anything to overcome.

So what – it probably is hard to have a disability – I have a special car, deal with wheelchairs and access issues like no ramps, and am not able to run on the beach, not to mention those personal things – like how long it takes to shower, etc.  And I’d agree – that yes, there are times it is hard – like the shower time thing or no access and it really is a drag to be with someone who thinks walking on the beach 24/7 is what they want to do.

However, much of my life is not spent in that identity – the one where things are hard and I’m angry that they are.  In fact I’m working on not identifying with that “identity”.  I’d like to live in the moment and be with what is. 

This means whenever people patronize me or project onto me what they think the disability experience is like – I flip into that identity.  This is upsetting because it comes out of the blue – it’s not like I am venting about how expensive my car is and how hard it is to walk on the beach when these comments and concerns come at me.  It would be appropriate then because they would be supportive of where I am at.  Rather the comments come out of the person’s mouth when they are struck by the difficulty and have an urge to what? Bond with me, empathize? And I am not necessarily in the “oh life is so hard cuz I’m disabled” mood and don’t want to be in that mood.  It is also true that their projections aren’t necessarily my experience – ever. 

So why don’t I just recognize that what they are saying is their experience and their projections and let it go?  Instead I have the need to verbally object: “It’s not that bad!  Everyone has difficulties!  Really I’m OK with this life experience, honest!”  Is it possible for me to allow them to have their experience and still stay centered in who I am?  Maybe – I’m working on it.

Maybe others reading this blog will have favorites as well to add.   The other thing that happens is people are curious about why I use a wheelchair.  This is less amusing – not completely sure why.  My answer depends on a number of factors such as how well I know the person, where I am when I’m asked, my mood, the age of the asker and my age at the time I’m asked!  Over time I’ve mellowed, or I think I have, when answering this particular question.  When I was younger, I usually reacted pretty negatively to the question – it seemed like a privacy invasion and that the person only had an interest in me because they were curious about my disability.  The disability community at that time considered it extremely rude to ask why a person was disabled.  Maybe because the question is personal and answering it requires more than a one liner.  It also opens me up to more questions or advice.  Questions that become increasingly personal mean I may have to give information that is not appropriate for the relationship.  Advice can extend to recommendations of faith healers or information about some person or the other they know of with a disability who ate a certain way or exercised real hard and was cured.  Perhaps the worst for me is the person who tells me how they almost had to use a wheelchair and are so relieved they did not have to.  I’m working to have a more positive reaction to that - such as – those people aren’t strong enough to handle having a disability so it is probably good they didn’t get an opportunity to live with one.

As I’ve aged, I respond differently to questions about why I am disabled.  With children – I always try to give an answer and phrase it in a way that they can understand.  It also helps to quiz them a bit because sometimes they just want to know if my leg is broken!  And giving too much information is confusing and more than they were looking for.  With adults – if I don’t know them well – I tell them they have asked a personal question and that I don’t usually discuss my disability with people I don’t know.  If it is a friend - the question is not usually asked - because I’ve already volunteered the information at some point during the friendship.

At Warm Springs – they had white leather – which all the girls wanted instead of brown.  So my braces from there had white leather.  To make a back brace, they put me on a table  – pulled from both ends and wrapped plaster around me.  They cut that off and used it as a mold for a very hard plastic back brace – went from my tail bone up under my arms.  It was very rigid and I could not bend very well in it, it was hot and when my boy friend put his arm around me – I could not feel it.  Some years later – when I was around 17 years old – they decided I was done growing and allowed me to wear a soft corset with stays and no head traction.  I was ecstatic!  My clothes fit better, I was more flexible and I could feel my boy friend’s arm around my waist!  And it didn’t show!

I still wear a corset.  It gives me relatively good support so I can sit all day.  Without it – I kinda mush over and my back tires and aches within about 2 hours.  Trouble is a corset only last about 2 years.  Fabric wears out and the stays begin to poke out and stick me here and there.  The place I’ve been going for the past 30 years had their last corset maker retire this past year.  And no one else that I’ve found – makes them anymore.  I’ve checked with my post polio contacts and they are all in the same boat.

Last year I went to a orthotic place in Sacramento – the brace maker was not very sympathetic to my desire to have the same thing I’ve always had.  He told me there are no ready-made corsets left to be customized nor anyone to make one from scratch.  He showed me other back supports – things with velcro to catch on my lacy undies or hard plastic again to make me rigid, hot and no longer able to feel my husband’s arm around my waist.  I complained – big surprise - and he told me that post polio people are the worst – they never want to change.  I could have told him how difficult it is for us to adjust to change in our physical environment because we have to create new muscle adaptations to accommodate the changes.  But I didn’t.  I could have told him how humiliated and embarrassed I was as a child to have people point and stare at me because I had to wear ugly braces and how I’ve really never gotten over it.  But I didn’t.

He found one last corset that could be customized for me – so I shut my mouth and took it.  This year I need a new one again.  I’m even considering the plastic.  Or buying a sewing machine and trying to make a corset myself.  Or looking at how I feel about “equipment” – seeing if I can get past my childhood memories and embrace “equipment” – so to speak.  Even to me that sounds hokey.  In San Diego, I found a Goth person who made corsets – real old-fashioned ones with boning.  I’m going to try finding another such person before I give up.  Wish me luck.

Wheelchair access is real important to wheelchair users.   Many of us want to be out in the world and see and do the same things as people who don’t use wheelchairs.  I also want to see and do without a lot of brouhaha.  That means I want the access to be there already – I don’t want to ask for it or try to find it.  If it’s not there – I’d prefer to go elsewhere.  Trouble is if it does not exist many places – I find I have to take action to get the access so I can see and do.  As Dennis the Menace said “Get up! Let’s go everywhere and do everything!”  That’s what I want.

So recently I’ve been on a spiritual quest.  I’ve decided to take up meditation and awareness practice.  This is not easy stuff for me to do – I am constantly finding reasons not to be aware.  I did a google search for meditation opportunities in Sacramento.  Found a few and inquired about wheelchair access.  One had fantastic access, one did not reply and one said they were getting it any day.  So I went to the really accessible one and the one that recently got a ramp.  I most enjoyed and felt I got something out of the one that added a ramp.  I started going as I could and when I could resist the reasons not to.  Then just to make it a bit harder – the abbess told me they were only going to put the ramp up when I planned to come and not keep it up all the time.  You see it was making people have liability concerns – someone might trip and sue.

I feel like access should always be there.  I don’t like asking for help.  It’s that thing about being a recipient of charity or help, but not wanting to be a recipient of charity or help.  This goes back to my church issues – often the message to church members is: be of service and help those worse off than yourself.  In my experience – I’m that person – the one who needs help and is worse off.  But I don’t see myself that way and don’t want others to see me that way.  And so the dilemma.  Do I just suck it up and ask for the help?  Or do I try to make a point about access?  My reasoning is that if there was access – I’d not be the one who is worse off and thus in need of charity.  

However, my awareness practice is showing me that I don’t have to accept the role of the “worse off one who needs charity”.  No one can make me a recipient of charity without my permission.  And I can’t control how others view me – I just can’t – so I plan to get over myself and think about things that make me happy.

We decided to fly to National Airport because we could take the Metro to our destination in DC, but Southwest does not fly there – I like Southwest usually – they treat me well – so I take them when I can. This time we flew Frontier Airlines. While on route to DC, I read the Frontier magazine. It had a nice little article about how they really like to accommodate their disabled passengers, including making space on board for a folding wheelchair. I love having my wheelchair in the cabin – it is much safer and not subject to the whims of moving baggage in the belly of the plane.

So on the return trip – I asked at National Airport if I could take my wheelchair on board as described in the magazine. I was told that to do so would mean 3 people would have to be bumped from the flight. Appalled – I said fine put my chair in the belly of the plane. We changed planes in Denver and I decided to try again. A similar thing happened – I was told that people would be bumped if I did this. Being the b—h that I can be at times, I said – fine bump them! Next I knew a very young supervisor was in my face telling me I have to let them know in advance. Taken aback – I pointed out that the article said nothing about advance notice. I suggested he have the advance notice thing added to the magazine article so people would know to do that. We went back and forth a bit and finally he threw up his hands and stomped off. By the way when I got back to the office – it turned out my admin assistant who arranged the travel HAD let them know I’d be taking my wheelchair into the cabin.

Next a guy came to load me onto the plane and he went on and on about how carefully they treated wheelchairs in the belly of the plane. Finally me and my wheelchair got into the cabin! Turned out the plane really was not full and no one was kicked off the plane according to one of the flight attendants.

While I prevailed and got my wheelchair into the cabin – at what cost? It was exhausting trying to achieve something that is my right – not to mention all the airline personnel who have further evidence that people who use wheelchairs are pains in the rear! There are times when I’d just as soon drive to my destination – wonder how that will work out for me on my trip to Africa?

Having used a wheelchair for a really long time – you’d think I’d be over having my buttons pushed. But I’m not. I became disabled about a month after I turned 4 years old, which is more than 50 years ago. Since then I’ve continued to struggle with making peace with how people react to me. I still get angry and frustrated and even yell. I wish I’d grow up. I wish I’d realize no one can make me a victim or make me feel bad without my permission. How I wish I’d learn.