This last week I thought to take a quick note of the events over a three day period that had a relevance to Disability: we are living in a fast changing world and it disturbs me how much is out there about our lives and it is not at all good.

23/4: The House of Commons votes against the amendments to the Equalities Acts and it remains in place.  Hurrah but….I didn’t even know that they were proposing to change this amendment to the law. How was such a major shift in thinking presented, and how did it get this far without the media being aware or being so disinterested in reporting it? Methinks that there may be other pieces of disability rights legislation that have been shafted.

The Independent Living Allowance to be scrapped by 2015…a ruling made in Court 28 which was inaccessible to the five people who brought the case to court, and yet they deemed that it was fulfilling its public sector duty to equality.

24/4: Ryanair – AGAIN! The notorious airline will limit the number of disabled passengers to just 4 per flight – those of us who can ‘hide’ their impairments are likely to do so in fear of not getting a seat. The planes seat an average of 150 – statistics state that around 22% of the population are disabled people = 30 people, so Mr O’Leary – is it only a certain type of people who matter?

25/04: I read in the metro that  in a recent travel survey, four in ten wheelchairs users have been verbally abused or attacked on public transport and 41% of blind people have been insulted.  It is what we already knew – disability hate crime is on the increase and it is happening  in many places.

We have to remain vigilant and start to report things. From this point on I aim to keep a record of all the things that are directing change against disabled people’s lives.  Do send any to me.

Blog from Ann Wade – Executive Director (Pro Tem), DaDaFest

I went to an interesting event on Monday this week and thought I would tell you all about it. As part of the ‘What Next?’ movement, 650 people from arts organisations across the UK gathered in the Palace Theatre to discuss how we can get people to recognise just how much they value culture and how big a role it plays in people’s lives. To make it clearer, someone used the comparison to the recent campaign to stop the privatisation of the forests – no one thought about how much we value our forests until they were under threat. The more people who value our culture, the more protected it will be in these times of cuts.

Main thoughts of the day: this is a conversation for everyone; culture makes us who we are and want to become; arts organisations should reach out to our artists, other creatives and audiences; and the message most tweeted on the day, the arts are the most powerful tool for social change. If you value the arts and want to be part of the movement go to the website www.whatnextculture.co.uk

What Next? is a movement bringing together arts and cultural organisations from across the UK to articulate and strengthen the role of culture in our society. We want to engage the public in new and different conversations about how and why the arts are important, and become a catalyst for fresh thinking and new policy ideas (whatnextculture.co.uk). 

Post Show Debate at Playhouse Liverpool on 27^th April 2013.

Panel: Gemma Bodinetz (Everyman/Playhouse Artistic Director & Producer of Joe Egg), Stephen Unwin (Director), Mandy Redvers-Rowe (Creative Director Collective Encounters), Dr Janet Price (Academic – Women & Disability Studies), Ruth Gould (CEO DaDaFest, Chair of the discussion and author of this paper).

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The Everyman & Playhouse Theatres in Liverpool approached my company, DaDaFest in Autumn 2012 to enquire if we would like to lead a post show discussion on ‘A Day in the Death of Joe Egg’; this is arguably one of the most controversial plays about disability of the last 50 years. Its writer, Peter Nichols wrote it from personal experience, as his daughter, who was just three when he finished the play was living with similar conditions as Joe.

The work at DaDaFest creates opportunities for disabled and Deaf people to work in the arts and a necessary part is in addressing the inequalities we experience. One area of our focus is in seeking to challenge the role of disabled people and how they are represented and their presence within mainstream theatre: so this post-show discussion was an offer we could not refuse.

I applaud Peter for pioneering in this subject matter, as disability was, and still is, stigmatised and very much a taboo subject. In the 60’s, this stigma was more openly negative than it is today; it was fascinating to discover in researching its history, that getting the play to the stage was fraught with difficulties, not only from theatres who shied away from staging it, but also in the battle with the censors of the time (theatres were still subject to censorship in 1968, a year after Joe Egg was first staged).  Even on its opening night, the Censorship Board insisted that the theatre had to place warning signs up to let people know that the content would be likely to offend.  It was felt the show would upset people and criticism and complaints were expected: none came.

There is no doubt that the issues surrounding disability are huge and complex.  Even today we continue to experience extreme opinions, causing more confusion than ever before: from the ‘inspirational’ coverage in the UK of the Paralympics in 2012, through to the rise in disability hate crime as more people are infected by the notion that ‘we’ cost too much money and therefore must be a burden on the welfare state. These extremes have placed us into very dangerous and uneasy positions, ranging from ‘inspirational porn’ [[1]Liz Carr in interview with BBC 330/08/12], to being once more heralded as ‘useless eaters’ [[2].].

Likewise this play provokes extremes in reactions in how the issues of disability are perceived: from those who endorse it in bringing unspoken issues to the fore,

“ …..every family member is affected. The disabled does not suffer the disability alone; the entire family as well as friends and relatives – suffer the ramifications.”

Terah Herman – The Disabled Family Dynamic in Drama 2008

Through to other reactions, and usually that of disabled people, about the dangers of such depictions:

“Portrayals such as this further the myth that disabled people are a burden on society.”

Laurence Clark – Only When We Laugh 2003

There is no denying that this is a work of huge importance in provoking controversy at the time of its release and still today, 46 years later. So I do recognise Peter’s aptitude to capture these emotionally challenging moments in life.  I congratulate the Everyman/Playhouse in reviving this production and pleased that Stephen Unwin put together a brilliant cast to bring new edge to the play.

Stephen’s production has raised many positive and cathartic reactions from the audience. The Playhouse Theatre has received many letters of congratulations and thanks. Most of these, are from carers and parents who have reported back as to how effective the play has been; how it has allowed their voice as parents and carers to be heard and in so doing has helped them.  The emotional reaction to the play is noted, with people openly weeping at the end.  Interesting to note that ticket sales were slow to start with, but as it ran it course, audience numbers increased and grew through word of mouth.  I know the Playhouse is rightly proud of their achievement in putting on the play, and also in finding Stephen Unwin to direct it, as he brought in a different and honest perspective of his very personal journey to the production.  It is thought to be the first time the play has been directed by someone with personal experience of having a child similar to Joe.

The play allows the humour to fully emerge, and the actors work this to an enormous effect.  Ralf Little as Bri, and the remaining cast give it some welly, with the supporting characters playing to stereotypes brilliantly. Yet at the end of it, the unresolved issue of Joe leaves you fighting to hold back tears: the family unit is broken.  The veil of humour they lived behind is no longer able to cover up the cracks, the exposed human psyche of not being able to cope hits you like a punch to the stomach.  At the end Joe is left centre stage as the light takes time to fade, spotlight left on her to the last minute, but it is not her you feel for, it’s that fact that her parents can’t manage. You leave the theatre holding onto this emotional response. This is where I feel the play hits you the most: it is too hard to look after profoundly impaired people.

A device that is used throughout the play is in breaking through the ‘fourth’ wall. The actors address the audience full on, detailing their hidden thoughts. This exposes and highlights the individual feelings behind their interactions with the other characters.  It is a great device and Stephen allows it to come into its own, especially early in the play where the Character of Bri ad libs with the audience.  It means we are drawn in emotionally at the earliest stage and allowed to fully engage with the unfolding story.

I also appreciate how the other characters within the play are depicted, especially in how Peter Nichols has cleverly captured people who bring in varied reactions and responses to Joe, and therefore to disability: Pam who only engages with, ‘PLU’ [People Like Us], hates difference and unattractive people.  She literally runs from the sight of Joe.  The character of Grace, the interfering Mother in law, blames Sheila, Joe’s mother and loves to lay on the guilt Sheila feels as God’s punishment due to her promiscuity before she met Bri. Even the ‘do- gooder‘ responses from Freddie depict how people enjoy helping the ‘afflicted’ and can unhelpfully interfere and think they know best in how to deal with the issues.  The parent’s relationship is obviously the most in depth: I resonate with Bri’s bizarre and wacky sense of humour and the positivity from Sheila; yet feel a great sadness as they do not talk truth to each other, they create fantasies, they fail to listen to each other, and Joe is ever present as a burden, only their responsibility.  The role play of characters from Bri is particularly astute, as we are introduced to the stereotypes of the Doctor, a Consultant and a Vicar who clearly represent how people have inputted, dismissed and left them hurting and without hope.

The set design is brilliantly caricatured from the garish 60’s with discordant shapes and colours, with the big finger pointing forever centre stage as a surreal symbol of focus, and attention: why me: well why not you!

The debate was opened by Gemma Bodinetz explaining why she wanted to put this play on.  This was triggered by the emerging media attention of Paralympics and the inspiration she had felt with seeing so many achieving disabled people.  It got her thinking about the voice of those who could not ever take part in such activities.  Only around 15 % of disabled people’s impairment groups can participate in the Paralympics, a platform where the Games are divided according to medical conditions and categories of impairment. Gemma wanted to give a different voice, a ‘raw story’ and her choice of play was auspicious. Her desire for authenticity and truth led her to contract Stephen to do the job, due to his personal experiences.

Stephen was really delighted to do the play and felt he brought more to it due to his personal experiences.  His pre-launch interviews focussed on the fact that he has his own little boy, coincidently called Joey with similar impairments.  The Independent captured his reasons for the play:

“Disabled people – especially children – are still largely invisible from our lives and as the parent of a child with even the mildest of difference might agree, some of the most hurtful problems they face are coping with other people’s attitudes and the pressures that your child limitations might place on one’s own experiences”

The Independent April 2013

Mandy’s experiences as a disability arts director and producer over the last 25 years, led her to explain how many disabled people are not written into plays or allowed on stage to perform.  There has been historic fascination of disability stories and content, but these have not been led by disabled people themselves and usually used as a device to highlight the awful experiences of living with impairments and the negative effects it can have to those left to care and support.  Joe Egg is a prime example of this. Mandy noted that the play has been revived constantly in many mainstream theatres across the country since 2000.   She also raised the fact that we never get to hear Joe’s voice in the play – it is all about other people’s reactions and sadly that is usually the only mainstream positioning of disabled people’s stories.  It is now possible to hear the stories and voices of people who have previously been thought  of as being unable to communicate through new technologies and advances in medicine, yet we can still hark back to these old stories, failing to give an updated account of life as it is today for disabled people.

Janet talked about the ‘absent presence of Joe’ and how this created a hole in the play.  Disabled have moved on yet the taboo and assumptions about our lives still create gaps and unrealities as to the truth of our voices and experiences. She mentioned the use of terminology and how words and phrases keep disabled people in their place, but language is very powerful and disability associated words are not led or chosen by disabled people, they oppress and contain us. Language is an on-going issue in how disabled people are referred to and we are sadly used to viewing words that are related as a way of holding back and stigmatising our lives and presence. Janet also made a very poignant observation: the gap between carers and disabled people.  We need to bridge this gap and create some clear lines of communication, which rarely take place.

The voice that is always missing, but forever screaming out throughout the play is that of Joe’s.  That is where we as disabled people feel the punch. Our voices are left out: most of us growing up or acquiring impairments have been largely ignored, spoken over and at times written off.  The issues very pertinent in the production play with the notion of killing Joe – she is suffering and they are suffering.  Sheila will not entertain this, ‘not even a little bit relieved’, says Bri, when he relays the story that he has smothered Joe.   Bri can see no way through the position: he obviously loves Joe, but torn, “…every cloud has a jet black lining”.

Jessica Bastick-Vines (Joe) joined the discussion to explain her research into the role.  As a non-disabled person she wanted to get at the truth of the portrayal and went to great lengths to meet and connect with a person living within a similar position to the character of Joe.  I would argue that Jessica played the role very convincingly – she physically recreated the spasms that many people with cerebral palsy have and showed seizures authentically, not over played. I was pleased to hear she consulted a person with the same impairment, as in the past it would have been automatic practice to consult doctors and experts, not disabled person themselves.  The person she consulted will be going to see the play in London, so we have been promised a reaction from her as to how she feels about the portrayal.

Ralf Little (Brian) joined the discussion. He felt that it is one the best things he has ever done as an actor, the work he is most proud of.  He counteracted a question from the floor saying they felt that it was a play of its time and not relevant to today,  stating that he was adamant that it is a work of today as the issues it brings to the fore are relevant and need to be discussed.

Questions from the floor were limited by time restraints due to the evening performance: one point that was raised by a few people was to why Joe was not played by a disabled person.  There is a clear part in the play where Joe comes ‘alive’ as her Mothers fantasy of a skipping, singing little girl in school uniform is seen. Joe addresses the audience, again breaking through the fourth wall.  For this reason alone, we were informed that no disabled actor could play the role.  It makes me all too aware that when you live with impairment or impairments, people fail to see you as anything other than being defined by that condition.   An audience member said to me after the show, how can a disabled actor play that part and skip and speak?  We never suggested that a person with exactly the same medical issues as Joe play Joe, but by appointing a disabled person more truth would be given to the role, as it would be acted by someone who understands and experiences oppression, or being talked over, what is it like to live with spasms and other conditions.  I know many actors who can play a range of roles and feel sad that casting directors, producers and  writers can still fail to see the professionalism and skills of disabled or deaf performers.  It highlights the fact that we have a long way to go to being seen on the stage in a myriad of roles and productions.

In a Facebook posting, Dr Paul Darke posted this,

“ ..a cripple with a voice is just too much for them to handle “ and “ could you imagine the same narrative around race or gender or sexuality”  27^th April 2013

It is an interesting point to ponder; disability activists have argued for truth in portrayals from the perspectives of disabled people.  There are certainly many actors around, but all too often they have to work solely within disability arts contexts, they long to be taken seriously and be on the stage alongside their fellow actors, but the world it would appear is still not ready.  But we do not sit back and wait.  I received this positive response from international multi award winning playwright Kaite O’Reilly, who stated that this play…

“ ….helped her to write about disability from the embodied experience of sensory and physical impairment, challenging the limited notions of normalcy and definitions of what it is to be human.”

Kaite went on to say,

“The play is extremely funny and human and well-written and it was important in its time as it gave voice to something that had not really been explored before – the experience of non-disabled parents raising severely disabled child. This is valid and important – but it was written in 1967 – almost 50 years ago and a product of its time, reflecting a particular society that did not value difference or all the possibilities and variations of human embodiment.  It reflects a time before our Civil Rights Movement and the challenges we made to the medical and moral models of disability.  A Day in the Death of Joe Egg helped fire me up as a playwright to write disabled protagonists, not victims, and to give voice to what had previously only been the silent, silenced ‘parsnip’ in the corner.”                                               Kaite O’Reilly, April 2012

I am also a parent of a child who has been diagnosed with Autism, even though I am a disabled person myself [hearing aid wearer since the age of six] and working in disability politics since mid 90’s, personal experience has surprised and shown me that it is still a massive, life-changing, devastating, shock when you realise you have a child that will not develop in the same way as other children.  I was taken aback to feel these things and felt conflicted as an empowered ‘social model of disability-ist! ‘ My experience took me through a huge range of emotional reactions from guilt feelings, such as ‘what did I do; drink too much or eat the wrong things during pregnancy; not labour properly; go back to work too early; get the MMR inoculations,’ through to the, ‘why me’?  We always seem to look for the ‘whys’. Dealing with the extended families negative comments and especially their judgements, doubles the anxiety and you find fighting and bickering becomes common place, always coping with internalised turmoil’s, a  mixture of jealously, shame and stigma which is too hard to admit and face, especially when your principles tells you otherwise, as in my case.  When our daughter had ‘turns’, particularly in public places, you want to explain, give her history, justify through the medical labels and diagnosis. I found that within the immediate family unit, the tool of humour was used again and again to hide the real depth of feelings and fear, particularly fear of the future, the unknown and the negatives of the prognosis.  These emotions had to be faced and dealt with; wise friends stepped in and helped us to process the trauma we felt; opportunities such as courses on ‘living with Autism’ in the family, which we attended, have helped enormously and totally changed our view points, providing us with strategies and measures to ensure our family unit functioned and worked, allowing our daughter to be listened to and flourish. But the most important aspect  is being part of the disability community that talks a different talk: that of liberation and not of suffering, of nurture and positive support , not being looked after and made to be dependent upon systems and negative view points of disability. That is how attitudes change as we begin to support and encourage difference and use language that empowers.  In reflecting back, our experiences have been positive and the doom and gloom picture we were presented with upon first diagnosis, has not been our story.

Yet, I am all too aware our experience is not Joe Egg’s experience: her inability to communicate or physically demonstrate interaction, means she is perceived as a ‘vegetable’, implied that nothing is functioning, creating a sub text throughout the narrative that ‘Joe would be better off dead’. To me, that is the crux of the play – we are still a problematic people.

Lastly, I was really astonished to read that in Peter Nichols preface to his published script in 1990, he states that upon seeing a student’s performance of the play, two days after his own daughter’s death at the age of 11, he, “….felt a strong urge to stand up and announce the good news”.  Euthanasia is an ever present Sword of Damocles, and I am saddened to say if it had taken place, the plays ending may have been very different.

My thanks go to Gemma Bodinetz and Rebecca Ross-Williams from the Playhouse , Stephen Unwin for coming from London to take part in the discussion and Dr Janet Price and Mandy Redvers-Rowe for their contributions, and for Jessica and Ralf joining the debate.

The event was brilliantly put together by staff at the Everyman and Playhouse Theatres and DaDaFest so I thank them for their hard work in making it happen.