Blog: Chicago Visit Day 4

Blog by Ruth Gould, CEO, DaDaFest

It is my last day and I am feeling rather sad. The weather has been amazing and yesterday I actually got sun burnt and have a very red nose. I had a day to discover the city and took a boat ride for one and half hours on the Chicago River…it has a fascinating history and the river connects to the Mississippi so we could have gone right down to New Orleans!  I was tempted…

I had one last event, but before this I spent some time with the BOW festival director, Carrie Sandahl to share aims and see how we can make a future network.  The big premise of BOW, and its only second outing, is about asking what is disability arts? What defines it and shapes it?  It is certainly a big question for the US.  I do think we work from different perspectives and so have a great deal to learn from each other’s experiences and approaches.  I know we will be linked for many years to come.

The last event I saw was a play in progress about the relationship between a son and his parents. It was clearly a work in progress and very wordy – something I suspect is a characteristic of American theatre.  We had a post-show discussion designed to help the writer and I thought it would serve him well to take note of the comments and bring more depth to the characters and their interactions.  I think work set within dysfunctional family settings should not be afraid of showing the complications and contradictions that make up these relationships. Great to see that BOW is exposing the work of new writers in this way.  The theatre was out in the suburbs as a way of affecting change towards their access understanding and provision and increasing new audiences, something Carrie is eager to do throughout the festival.  It did make it hard to get across Chicago at times, but I like her thinking and this type of thing does work for a city of 2.7 million!

I was up very early again this morning and went for a walk watching the city wake up, and walked along the lakeside beach alongside the joggers and cyclists.  It is such a glorious morning and I feel very privileged to have had this opportunity to link and meet the amazing people I have, especially in knowing that our experiences as disabled or Deaf people transcend our cultures and national identities, the camaraderie has been the best!

Blog: Chicago Visit Day 3

Blog by Ruth Gould, CEO, DaDaFest

Chicago 19/5/13

“The sun was out in force on Sunday so I went for a walk in the park along the lakeside…I say lake, more like an ocean. I could not get to the water edge as a marathon was taking place……there are people running everywhere, on bikes, power walking, etc.

I order my breakfast at the aptly named artist’s restaurant and think through the events so far…then get a text to say hurry to the Museum of Contemporary Art (MCA) to order a ticket for Back to Back…they are selling out! Off in a cab and book my ticket.

I have arranged to meet Riva Lehrer, Lisa Bufano, Jim Ferris and Christopher Smit for lunch at the MCA…it was an interesting conversation.  These guys know their stuff and have clearly thought through rationales for their work, but I couldn’t help feeling apart from their thinking. Their experiences and observations are articulated through an academic framework and they attend many national meetings to support their views and practices; I am left wondering where the grass roots work fits in and observe that the social model doesn’t really feature too strongly in American work, it tends to be focused on aesthetics and embodied disability depictions that remain and are owned by the artist.  However, it was good to hear different viewpoints and helps me understand where our work differs and how we can possibly work towards new conversations.

I was eager to see the work of Back to Back Theatre’s Ganesh Versus the Third Reich, a story about the return of the Swastika. It was an interplay between the main performers of the company and a non-disabled “director” and his clashes with them as they failed to do what he wanted them to.  The stage was bare and scenes introduced through plastic curtains pulled across at various times with a clever use of back lighting.  There was a very realistic elephant head and the actor using it had great presence.  It was not an accessible performance for me: there were two AS interpreters right at the far left so to follow them was akin to a tennis match.  I have never seen two SLI’s being used to play the different characters voices, not sure I liked it!

I think this production is a definite one for mainstream theatre, even though I am interested in the company for DaDaFest, Back to Back is set out to change the opinions of mainstream practices, not move the disability debate on.  Clever, witty and disturbing, I understand why they have such a big reputation.

After the show I went for a Mexican meal with another group of brilliant artists, one of whom has met Jonny Depp and George Clooney,  plus we were joined by a TV company from Taiwan….two margaritas later combined with jet lag…but we have made a link!

My last event of the night was to see a show written and read by Arlene Malinowski about depression, A little Bit Not Normal.  It was a staged reading with captions across the a screen at the back of the stage. Arlene led us though her journey of depression – which was personified as a seductive schemer who manipulated her by words of comfort to make her pull out of life.  The back line to her tale was that both her parents are Deaf ASL users, though their story was used more to show a positive childhood – nothing mentioned about how many Deaf people live with mental illness, which I thought was strange. It was similar to Amour and Still Alice, as it was a love story about how her partner Dan supported and helped to bring her back into ‘normality”.  It was firmly set as a story of hope, which I thought made it simplistic and lacking punch of how depression can be like the black dog, forever returning. I also again noted the huge cultural differences in how the UK and US deal with this issue.  The medication played a big part, no mention of CBT at all!  I felt the resolution was a bit too hopeful, a cliché that makes everything OK in the end. I note the context of the work has come through an academic route: I am longing for the grass roots work of how impairment and disability social issues affect lives.

bed by 11am…or 5am GMT…..”

Blog: Chicago Visit Day 2

Blog by Ruth Gould, CEO, DaDaFest

Chicago 18/5/13

Bodies of Work (BOW) theme: Disability Arts, Culture and Practice

“Day two: just recapping whilst I have breakfast – ordering Monkey Pancakes with almonds and whipped cream!

I was invited to breakfast with some of the key players in the festival…walked through Chicago from 9am to find supermarket to buy some brunchy items.  Loved the peanut butter and jelly choices!

We met on a sunroof in a 50 storey apartment block. Petra Kuppas was there  – she has worked with us in Liverpool in 2002 and 2006… so good to hear how she is working, so must get her back.

I also met with Christine Bruno and the woman of the hour herself, Carrie Sandahl.  She was dressed smartly as she had found out she was being interviewed for ABC TV.  It is only the second BOW, the first one was in 2006, so will be interested to know how we can link more for future work and why there was the huge gap.

Met the most incredible array of people, Leslie, Simi, Leit, Jim, etc…too many to remember. I totally indulged myself on all the high calorie American junk food that I could – well I am here to experience everything possible in my 4 short days.

Next Simmy, (a film-maker and activist), Christine and I went to see the arts exhibition that has been curated by Riva Lehrer. It was about people’s experiences of embodied disability. Some interesting work, but it left me so aware of the political differences in how we curate work in the UK based on the Social model way of working i.e, disabled by society. This exhibition had a mix of work from disabled and non disabled people, showing the carers experiences too. Most of the work was about the lived experience, showing suffering and changes in the body and how the issues of living with impairment affects and impacts.  I can’t say I liked it, some pieces were very beautiful, but I felt their placing as a group of work has missed a point. The gallery information person went on to tell me in words to that effect, that it was really right that we understand the suffering of the people with disabilities.  The gallery venue was set up to promote women’s work and the work of the disadvantaged in American society and was quite far out of the city centre in a run down area so I was saddened it was not more mainstreamed, but glad that outside areas could benefit from BOW.  Talking with Riva later I got to hear about how the main gallery curator really censored some of her creativity and her final choices we not really what she set out to achieve. Maybe she should have pulled out and made a point that way, that the art from the perspective of disability should lie with disabled people and not be compromised by non disabled intentions.

Next, we went onto the Access Living Centre (it is huge and art is all over the place) for a reading by award winning author Susan Nussbaum…she has written a book set in a residential institution for young disabled people. It took at least 100 drafts to complete, but it is ground breaking as it is the voice of the young people from a disabled persons experience of said institutional life.  I was surprised to learn that the inclusive education rights have not extended right across the Sates and it is a lottery re: education depending upon where you live. I bought the book, got Susan to sign it and will pass onto to Sam, our Young Peoples Arts Manager.

At 6pm I attended a wonderfully curated dance show…it was so clever and moved me on many levels.  I have made lots of new contacts, but delighted to have met Lisa Bufano – we tried to bring her to DaDaFest in 2009…her work with prosthetic  limbs works well, but is really slow and deliberate. The impactful work of Kris Lanzo came to mind.

I love being around people who have the disability experience in common – it does break through the usual cultural barriers we have between different countries and creates an amazing sense of belonging.  One thing I am delighted about is the amount of people who have heard of DaDaFest.  I have had so many people coming up to me, including a state of Illinois Arts Officer who is interested in linking us up nationally through their ADA (Americans with Disabilities) programme! Wow!

I went straight off to bed: the six hour time difference is having an effect…in bed by 10 pm (4am GMT).  Exhausted but ever so happy.”

Blog: Chicago Visit Day 1

Blog by Ruth Gould, CEO, DaDaFest

Visit: 17 – 22 May 2013

At the Bodies of Work [BOW]: Festival of Disability Arts & Culture

Purpose of visit: To note how BOW promote the work and to explore how they connect into mainstream.

“On the plane over I watched the French Film ‘Amour’, as it was the only accessible feature I could access [no subtitles available on others!]. Little did I realise, but it set a theme for my first day.

The film is beautifully shot in the apartment of an older couple, Anne and Georges, dealing with the issues of stroke, paralysis and degenerative impairment. The film works in creating space, pulling out silence to a great degree and the viewer is forced into thinking about what is happening to the couple. It makes the viewer feel unbearably negative, doubled with the fact that Anne was a high profile piano teacher. I appreciate how the camera allows us into their lives as secret witnesses to their pains, humiliations, but also on their obvious love for the other.

There is undoubtedly an element of truth in how people react when faced with such dire experiences, from both of their perspectives, and amplified by how people close to them react. The hopelessness of their situation and isolation breaks your heart and you can sympathise with understand the actions Georges ultimately takes.

Even though I cried, I was left feeling that this is another example of how disability issues are mostly portrayed as dehumanizing and dire, that it is better to be dead than to live with obvious degenerative conditions, especially when you have led such an accomplished life. I was left feeling, “oh no”, not another negative, destructive, portrayal of disability, through to, “I just love French cinema!”

Then, once I had wiped the tears from my face, and got off the plane, I had to deal with the journey through customs. It was such a palaver getting though taking one an a half hours. I was sniffed out by the ‘drug dog’ to a worrying extent, and I even had a retina scan and all my fingers and thumbs scanned!

Once out, I was met by the notable friendliness and support that America is renowned for, even had my ticket paid on the train into Chicago….I promised to pay it forward!

My hotel is wonderful, right in the heart of downtown Chicago.

As I am only here for four nights I am on a mission to get as much crammed in as possible. Even though it is a six-hour difference, I headed to a performance featured in the Bodies of Work programme, ‘Still Alice’ at the Looking Glass Theatre. The theatre was co-founded by David Schwimmer and focuses on new works. This piece has been adapted from the book by Lisa Genova upon witnessing her Grandmother’s progression with Alzheimer’s. The theatre was heaving when I arrived and was told no tickets were left. I am afraid I was insistent and said there are bound to be some no shows so could I wait and see if one comes in, which it did!

The production was in the round and employed a device to show the inner and outer self using two characters to play the main role of Alice: one speaking the things the other would not dare say to her close family and friends. Again I noted that she was a very highly successful woman, in this case a well-respected and published Professor specialising in psychology. This was used as a contrast to show how dire it must be for people to acquire such a life-changing affliction. Throughout the play, the ‘inner self’ moved away all the recognised features in a home, notably all the kitchen furnishing, cooker, fridge, sink etc until all that was left was a bare stage to illustrate Alice’s mind, confused, and empty, unable to recognize even where the bathroom was, so once again I saw a humiliation ‘peeing yourself’ scene. The kitchen setting worried me as I felt another cliché was emerging, that where most women are viewed, in domestic caring settings, despite their career heights.

The love for Alice by John, her husband created a more positive ending than ‘Amour’ and it did highlight the issues and thought them through sensitively, allowing us into Alice’s mind through her alter ego: it was a clever script and a brilliantly acted play. However, I didn’t feel it warranted the standing ovation that many people gave it.

In my opinion, there still hangs the sword of Damocles, that life is just too much when dealing with disability and life-changing conditions. Again the voices portrayed came from a non-disabled experience, though more accurately observed though Lisa Genova, still the disabled person voice is missing, and others, the carer’s and families who are left having to cope and deal with losing the person they once knew, is always stronger leaving a bleak and hopeless picture.”

Blog: Disability in the News Snapshot

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: What Next Culture Event

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). 

Blog: A Personal Response to the Play and Discussion

Post Show Debate at Playhouse Liverpool on 27th 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”  27th 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.


 

Disability Arts Online Blog

Aaron Williamson was artist in residence at Liverpool’s Walker Art Gallery from August – November 2012, commissioned by DaDaFest 2012 as part of ‘Niet Normaal: Difference on Display’. He used his time to ‘eavesdrop’ upon the paintings in the collection. As one of Disability Arts Online’s Diverse Perspectives commissions, Aaron blogged about his his work-in-progress ‘The Eavesdropper’ which culminated in a series of performance-based interventions in the gallery in November. Read his blog here.

Lucy Gardner, Assistant Curator of Fine Art, National Museums, Liverpool, has also written a blog about her experience of ‘Eavesdropping on a eavesdropper‘.

DaDaFest in Numbers

14,000 Colourful little pills (in Pharmacopoeia’s Wiet tot Graff (Cradle to Grave II))
870 Cups of strong coffee (approximately!)
160 Artists involved from 17 different Countries
150 Small plaster models of people (in Karin Sander’s Body Scans)
141 Tweets
125 Newspaper & magazine articles and reviews so far
99 Young people performed in Young DaDaFest
37 Brilliant volunteers
29 Events
14 Venues
9 Moles
9 Funders
5 Cities DaDaFest toured to (Belfast, London, St Helens and Preston, as well as Liverpool)
4 Unlimited Commission events
1 Dame (Evelyn Glennie)
And 1 Big Heart

We’re still counting up the visitor numbers, and will publish the total number of people who experienced the festival in the next DaDaFest newsletter (sign up at the foot of this page.) Thank you everyone who attended and to all the wonderful artists and performers who made this year’s festival such a huge success.

Changing Capacities Blog

Changing Capacities: Changing Identities, happening on Saturday 1st September, explores ways to transform the experiences of bodies that change through illness, age or ‘disability’. The University of Liverpool’s New Thinking on ‘Living with Dying’ Research Network in conjunction with DaDaFest 2012 (Disability and Deaf Arts Festival) are hosting this event. Through presentations, exhibitions and performances from creative artists and scholars the event seeks to stimulate discussion about the impact of changes on peoples’ day-to-day lives so that the lived experience of life-limiting illness and related phenomena is not always one of loss.

Confirmed contributors to what promises to be a vibrant day include the acclaimed author and poet David Roche, the musician and comedic storyteller Liz Bentley, and Ashley Savage, a photographer who, alongside the late model and performance artist Tutu (pictured) developed the exhibition ‘Cancer Sucks!’ questioning the ‘pinkification’ of breast cancer. Complementing core themes of DaDaFest 2012, the work of artists featured at the event disrupts established ways of thinking about ‘life-limiting’ conditions and questions the stability, not only of our bodies, but our identities as sick, disabled, even as ‘terminal’.

We also have a range of academic specialists at Changing Capacities: Changing Identities. They will be exploring some of the themes raised by the artists in more depth, but also will be setting out some key issues when studying the notion of ‘life-limiting illness’. The keynote speaker at the event is Professor Carol Thomas, a specialist on the Sociology of Health from the University ofLancaster. Other speakers include Dr Amy Hardy (a film-maker and academic from theUniversity ofEdinburgh) and Dr Rhia Cheyne (a disability studies scholar from Liverpool Hope University).

The event is being held in the Universityof Liverpool’s Foresight Centre between 9.30am and 4.30om. It is a free event that is open to all and we will provide sign language interpreters, a palantypist and audio description. For tickets please contact DaDaFest by emailing info@dadafest.co.uk or telephone 01517071733. To find out more about the New Thinking on ‘Living with Dying’ Research Network email: newthink@liverpool.ac.uk. or visit http://newthinkingaboutlivingwithdying.wordpress.com