Fraser Pollock - artist

Monica and David - Film review by Fiona Place

Monica and David, directed by Alexandra Codina and winner of the Jury Award for Best Documentary at the Tribeca Film Festival is a remarkable film.

At first blush it appears to be a love story – a couple presented as endearingly lovesick teenagers and about to be married. The only difference being Monica and David aren’t teenagers - but rather two adults with Down syndrome aged in their thirties.

As the parent of a fifteen year old with Down syndrome and employed by the Independent Living Support Initiative (a program which aims to help people with disabilities move from family-based living arrangements to more independent living arrangements) I approached this documentary from both an artistic and educational perspective. Would the film appeal to a general audience? And how well does it sit with the messages we want to convey to the community about Down syndrome and the possible expectations of life in adulthood?

We meet Monica and David just before the celebration of their love. The focus is on Monica’s dress (it is beautiful), the wedding preparations (they are lavish) and the couple’s intense passion for one another (which is deeply moving).

We are also given glimpses of their daily lives and learn more about each as the mothers (both named Maria) share with us how they feel about their child marrying and their dreams into the future.

Both mothers brought up their children singlehandedly and both are inspirational. However at times their ‘confidences’ alert us to another dynamic.

For example, in one instance Monica’s mother ‘confides’ to us that Monica likes to have a routine, that all people with Down syndrome need a routine. She then goes on to tell us (laughing somewhat) how Monica places her comb back in the drawer after brushing her hair with an exacting precision and that she ‘peeks’ as she closes the drawer to check the comb stays in place.

Now while I am the first to admit I have told similar stories about my son, have used humour as a short hand to explain who he is, it is still unsettling. It could be read as making fun of Monica, as devaluing her – on the other hand it could be taken as an endearing, amusing anecdote.

However you take it – and you could find yourself taking it both ways – it is apparent the claim, (the desire to which both parents profess); wanting Monica and David to live as man and wife - is not quite what it had first seemed.

The first realization comes after the wedding when Maria announces to the viewer she has never left Monica alone. Following this we learn neither Monica nor David can cook and that they will be living with Maria and her husband in a wing of their new apartment.

Now at one level all of this is perfectly understandable, however it does come as a surprise - the initial focus on the wedding setting up an expectation that Monica and David would move forward, that they are capable of more independent living arrangements.

Maria tells us Monica is her life – and while there is no doubting how much she cares and most of the time enjoys caring, the elephant in the room – ‘what will happen to Monica and David?’ remains.

The presence of this question is pressing and makes the film absorbing viewing. And while Monica’s mother admits she should expect more of Monica and treat her more like an adult, it is also painfully obvious how hard this is when there is so little formal and informal support focused on helping Monica and David work towards more independent living arrangements.

Life after the wedding is full of complications – the new apartment is not ready, David develops diabetes and there appear few services that can assist Maria and her husband – the one support worker that does turn up immediately launching into a discussion with Monica as to where she wants to live when her mother is too old and cannot take care of her. Since Monica and David are still yet to be allowed to go to the beach alone together it is not surprising Monica cannot think of an answer.

Interestingly it is the surprises that make the film compelling. And while they are no doubt more to do with Codina being unaware of the deep contradictions in the material she was documenting, the fact she is Monica’s cousin also probably played a part, affecting her capacity to be objective.

Fortunately, the bonus educational material (parents discussing these issues) fills many of the gaps and is able to explore the myriad of issues raised. The sum of the two parts making the film both useful as an educational tool and fascinating as a portrait of love and how we all have to continually make decisions that can support that love.

 This review was published in the December issue of Voice 2011

Independent Living Support Initiative

Independent Living Support Initiative


Down Syndrome NSW is the development organisation for this initiative and has collaborated with service providers and the NSW Dept of Ageing, Disability and Home Care to create the working model for ILSI.

What is ILSI?

ILSI aims to help people with a disability with low to moderate support needs, who have ageing carers and who have the goal of community-based accommodation.
Community-based accommodation can include a wide range of options including:

• living in the family home;
• renting your own flat or;
• shared accommodation.

It is up to you where you want to live.
Your choice.
ILSI provides support for you to live more independently through:

• the creation of a person centred plan to help you achieve your life goals and aspiration
• help to enhance and further develop your support networks and;
• intensive living skills development.

For more information please visit the ILSI website.

Water under Water by Peter Rix, Random House Australia, 2011 reviewed by Fiona Place

Water under Water by Peter Rix is a breathtakingly eloquent story about who we are and how we love. Simply written, it allows the reader to enter the world of ‘disability’ and the lived experience of Down syndrome.

It is the story of Jim and Tom Campion, a father and son who share a passion for the water, but little else. Tom’s mother Fran wishes Jim could love their Tom in the way he does their other son James. But Jim struggles and it is a weekend of white water rafting that will fully test his capacity to connect with his son and his wife.

The novel explores the importance of taking risks and the ways in which we think about what is and isn’t ‘risky’. Rix delves into the deep need for each of us to make our own decisions, to be allowed to decide moment to moment about our own well-being, happiness and life goals.

Rix has been inspired by his own personal experience to write a novel and not a memoir. In terms of literary merit this is important. It is likely the book will be compared to the hugely successful novel The Memory Keeper’s Daughter by Kim Edwards. Yet there are significant differences between the two. Edward’s focuses on the life long grief that follows a father’s decision to give away his and his wife’s baby immediately after she gives birth. The girl who has Down syndrome and has a twin is placed in ‘care’, and the novel centres on how this secret undermines the family’s relationships in the ensuing years. Edwards deals with her subject matter competently, but her book reads like the work of an author’s imagination. She also sentimentalises Down syndrome and portrays Phoebe as loveable, but always in need of care. Rix on the other hand has written a book informed (as we are told in the author’s note) by his own experience of parenting a daughter with Down syndrome, and while it is a work of his imagination it is remarkably authentic and does not sentimalise or infantilise the person with Down syndrome. As a result it is certainly the more believable of the two.

Rix has attempted to articulate the voice of a character that has an intellectual disability, allowing the nineteen-year-old Tom to speak directly to the reader. Textually and culturally this breaks new ground. Rix’s imagining the voice of Tom, allowing the voice of Tom and his friends to play a major part in the storytelling both innovative and brave. Rarely attempted it is likely Rix will be seen as having made a significant and important addition to Australian and international literature.

The voice of Tom however is not without its complications. Yes, it does give the reader an insight into Tom’s way of thinking, his capacity to conceptualise and express his emotions. However because Tom’s speech is so articulate and often similar to that of the characters who do not have a disability, the credibility of the voice as a representation of someone with Down syndrome could be challenged.  No doubt however Rix had his reasons - perhaps choosing to create a particularly able and verbally adept character for the purpose of novel because he didn’t want to have to portray Tom’s speech as being too different and risk making him seem too unlike the so-called ‘normal’ characters, thus possibly undermining what is the book’s most compelling theme: that love knows no exclusions. 

This review was first published in Voice, September 2011. Down Syndrome Victoria and Down Syndrome NSW Members' Journal.

StephTheBookworm reviews Cardboard; A woman left for dead

Interesting review by StephtheBookworm

Can novels trigger eating disorders?

Can books act as a trigger and potentially cause eating disorders in some young women? Should we consider restricting or even banning any work that graphically details the descent into chaos? Any work that includes figures (kilos or pounds) relating to the amount of weight lost?

This is an important debate. The encroachment and re-interpretation of what makes literature worth reading  by health professionals an alarming trend. The concern of the health professionals  usually centers around the supposed dangers of allowing young girls access to fiction, to novels which portray life with an eating disorder. Books such as Wintergirls, Wasted and Cardboard: A woman left for dead considered by some as potentially harmful and capable of triggering eating disorders in vulnerable young women.

As the author of the novel Cardboard: A woman left for dead an account of one woman's life-threatening eating disorder and her hard-won eventual recovery this issue affects me personally. After all, if there can be criticism of Wintergirls by Laurie Halse Anderson and Wasted by Marya Hornbacher could such criticisms be directed towards my work? And if so, should I take them seriously?

My initial response is to point out whether a text is fiction or non-fiction is irrelevant. Totally irrelevant. Because any text can serve as a trigger. For example, formal diagnostic descriptions such as those which appear in the DSM IV can be used as a guide, as a goal, the criteria alone providing thinspiration and encouragement to someone who is on already on the edge.

I would also suggest that restricting novels on the basis they may trigger'an eating disorder not only infantalises readers, but also fails to understand fiction is no more inherently dangerous than non-fiction, that any book can be used as an encouragement for weight loss - that a significant component of the illness is the search for inspiration, justification - be it in a medical textbook, a pro-ana site or a novel.

I would also point out the process of recovery is all about learning how not to find these materials appealing - how to see them for what they are - as descriptions of pain, difficulty and unhappiness. And that is perhaps here that it is the novel - the very text people are most likely to consider dangerous - that is more likely to be of use. That as a person recovers it is the multi-layered text, the emotional complexity of the novel that is more likely to provide insights into the journey towards recovery.

In summary

Novels such as Wintergirls, Wasted and Cardboard: A woman left for dead are a critically important part of the literature on eating disorders and should be on every reading list. Furthermore, whether a book is labelled fiction, semi-autobiographical fiction, autobiography or memoir is not necessarily indicative of its 'truthfulness' or 'usefulness.' Writers choose different genres for different reasons and it is the text that matters not the label.

Eating disorders and authenticity: is the voice of memoir more truthful than that of fiction?

There is a tendency these days to assume memoir unlike fiction, is more accurate, a superior carrier of 'truth'. But how accurate, how useful is this assumption?
We live in a world where reality TV is now more popular than drama. At a time when reader/viewers do not want anything 'imagined' and publishers know a memoir will sell better than a novel. But does this make the memoir any more authentic?
I would argue the issue of authenticity is complex. That both forms of writing have the capacity to speak honestly, to convey a truthful emotional experience and create a sense of empathy and understanding. Think Dostoyevsky when it comes to writing about shame, or Sylvia Plath and Robert Lowell when it comes to describing the minutiae of human emotion. No one form of writing has a monopoly on truth.
Some authors may choose to write a novel to protect their privacy and family whereas others may want to write a memoir because the form provides them with a certain structure and set of expectations. Importantly however, whichever form an author chooses they still need to shape and fashion the narrative, still need to work towards a narrative truth.
In my case when it came to writing about the experience of having an eating disorder I chose to write a novel because it gave me more freedom to tell it like it is - to create depth, present contradictions and write with an emotional honesty. To have written the book as memoir would have been too fraught. Too limiting. And in some ways less honest.
I also wanted the focus of the narrative to be on what it is like to experience an eating disorder, not me. But in a world where memoir is king can a book like Cardboard: A woman left for dead still work? Can it speak to a new audience and be read as authentic?
If the comments I have received so far from readers are anything to go by it would seem there is still room for the novel. One reader (who was happy for me to publish her comment) telling me:
"My favorite thing, as a whole, was that Cardboard was very real..it wasn't one of those, "one day I decided to be done with it; get better!" it showed that it was extremely difficult, a long process..that you would have setbacks and the like..I've read a lot of books on EDs searching for whatever I believed I needed to, "find," to get better and like Wasted, which I also think is so real..I believe books like yours have the ability to reach ppl because they are REAL..it's not a slap in the face, "well, just get over it!" it's raw, it's reality..it's the truth about what's actually like to have an ED."
And yes, she also asked "if you don't mind telling me, how much of the main character is actually from your own experience? 
I told her I did draw on my personal experience (ED) but I have always considered the book a novel - as far larger than me, about so much more than just me.
In summary
These days there is a belief only books on eating disorders that are labelled 'true', labelled memoir are authentic and worth reading. Truth however, is whether a book speaks to you.

Language, eating disorders and recovery

Recovering from an eating disorder requires hard work and reflection. The required reflection includes many things - one of which is understanding how how sense of self, our sense of 'womanhood' is constructed through language. 

Our sense of 'womanhood' is shaped by the stories we hear - from the moment we are born - from the moment the words it's a girl are uttered. With family, school, friends and/or work colleagues constantly 'informing' as we grow up what it means to be a woman, what is expected of us. 

For some women these stories are empowering and match their sense of identity for others however they do not match their sense of self - the mismatch and confusion often causing a sense of distress and opening the space for an eating disorder, for a narrative of food and weight to muscle in, to take over.

So let's take an example of how these stories of what it means to be a woman are told, how they get their message across and how we might deconstruct them.

Each of the following three statements contain 'stories'. 

 i) Although a woman, she ran the business efficiently.

The sentence could have been written as follows:

She ran the business efficiently.

On reflection we might ask why has the phrase, although a woman, been added? I would argue it has been added in order to suggest to the reader that women are naturally less competent than men. This sort of reporting goes on all the time and subtly reinforces the traditional artifical divisions between men and women.

 ii) A lady doctor came to see my wife.

This sentence could have been written as:

A doctor came to see my wife. 

The term lady doctor is used to suggest that a female doctor is a deviation from the norm. That it is not a woman's role to be a doctor. It is interesting too, that the male speaker chooses the word lady and not female. Lady is a weaker term than female and as such works to weakens her position as a doctor and person of authority.

 iii) Mother, wife and Mayor of the town Mrs Reg King opened the new school.

This sentence could have been written:

Mayor of the town Ms June King opened the new school.  

On reflection we might ask why the Mayor is defined as a wife and mother? Why Mrs Reg King? I would argue it is because there is still a cultural belief that motherhood is the reason for a woman's existence and that her first duty is to be a wife and mother. This sentence subtly suggests these duties should come before work duties - it certainly doesn't suggest parenting is a shared responsibility! 

This is of course only a small look at the role of language. And for those wishing to explore these ideas further there is the book Cardboard: A woman left for dead which describes one woman's 'writing' herself out of anorexia nervosa.

In summary

Recovery takes time and effort. It also requires a reflection on how life is storied, on how it is you want to story it. Because it is only once you can see how your sense of self has been shaped though stories that you can begin shaping out a sense of self that suits you, that is more you than it is food and weight.

The role of literature in the recovery process

Which model? Bibliotherapist or writer?

 The traditional model known as bibliotherapy regards literature as a therapeutic tool. Literature is seen as something which can be used to encourage and foster insight, as well as serve as a useful aid in assisting people to develop skills in problem solving; clinical bibliotherapists working with 'people with eating disorders' and their 'feeling' responses to literature in order to facilitate change and help them achieve their 'full potential'. This model focuses on the need for those using literature to be trained in psychotherapeutic techniques - there is little mention of the need for training in writing and textual theory. It is as if because the goal is to help people with eating disorders attain their 'full potential' then it automatically follows that psychotherapeutic techniques will be most helpful. But are they? 

As a writer who has run writing and reading groups within therapeutic settings, I believe it is equally important we offer writing and reading groups in which people are regarded first and foremost as participants in a writing group rather than patients attending therapy. That we consider the value of employing a writerly approach in assisting people recover from eating disorders. 

The traditional model in practice.

In the traditional model a bibliotherapist is likely to use a poem about loneliness to generate a discussion, to get people talking about their experiences of loneliness. To my mind such an approach not only treats literature as though it is transparent (which it isn't) but also risks making participants feel their status as patient is once again the focus and they are required to do therapy. As a result some may feel like withdrawing while others may simply repeat/experience the same story of loneliness without reflecting on how they are telling the story of their experience.

The writerly approach in practice.

Using a writerly approach a writer is likely to hand out a poem without pre-defining what the poem is about. And if after reading the poem someone in the group remarks: 'Yes, my father is like that, he is lonely, I try to encourage him but . . . ' A writer is more likely to ask: 'What is it in the poem that suggests a similar experience to that of your father's, how does the text create that response?' The benefit of this writerly response, this literature as text model is that invariably another participant will say they don't think it is loneliness the character is experiencing, that it is some other emotion. And with this important opening, this carving out of a textual space we are then able to reflect on how it is we story our emotions. That it is possible to shape and reshape our understandings of ourselves. That the story of loneliness, of an eating disorder can be reflected upon and rewritten. 

This not to say the psychological needs of participants are not important. They are. And writing can bring painful or difficult feelings into awareness. However to automatically see such pain as a signaling a need for a literature as therapeutic tool model is to misunderstand the invaluable benefits of using a literature as text model and the ways in which a writerly approach can open up the space for recovery.

Remembering Lena Zavaroni

A few facts: At the age of ten Lena Zavaroni became 'famous' (literally overnight) after an appearance on the television show Opportunity Knocks. Within no time the "little girl with the big voice" was touring America, singing to President Ford in the White House and meeting Frank Sinatra. Then on her return from this whirlwind of activity she found herself moving from her small Scottish island home to the busy city of London where she lived with her agent and 'worked' as many days as she was legally allowed to further her career.

It was within this context Lena developed an eating disorder and within this context she fought to recover. She fought as hard as she could, but at the age of 36 after a lonely yet very public struggle to find a way out of her eating disorder, passed away.

The documentary does not tell us why Lena became ill, but rather shows footage of her performing and interviews with her family, her agent and others who knew and cared for her. We 'see' Lena from many different perspectives. Lena loved very much by her family, but who quickly find themselves out of their depth with her burgeoning stardom and escalating illness. Lena courted by her agent, but who seems to have little capacity to nurture or understand her ‘star's’ needs, Lena loved and cared for by her cousin Martha and husband David who did all they could to nurse her back to health and Lena the performer, singing as well as being interviewed (some might say 'grilled') about her illness.

This is an important and valuable portrait on so many levels. First, it does not glorify or sensationalize anorexia but rather presents a sobering, empathic and intelligent understanding of the illness. Furthermore, because we follow Lena from the age of ten right through to the later stages of her life we are left in no doubt how intense, how powerful and how devastating an eating disorder can be. And while at times this story is deeply disturbing - Lena describing herself as empty, without an identity and in the later stages of her illness as living in a grey world in which she cannot 'feel' hugs or 'hear' any words of kindness it is a must for anyone wanting to understand the complexity, the mystery and the pull of an eating disorder.

It is also, despite Lena’s death, a guide to recovery. The viewer able to 'see' the various issues that can contribute to the path of an eating disorder. Yes, we are left in no doubt Lena had an ever-present and captivating desire to be thin, but we also come to realize it was only one part of her illness - the outward sign of the extent to which she felt out of control.

Why Lena felt so out of control will always be a subject of debate. It did appear she enjoyed working – and perhaps if things had been different her work (while possibly contributing to her illness) could also have played a part in her recovery. There are so many iffs in this film, if only she had met a therapist who could engage her, if only she had found a way to push the illness aside, if only . . .

Perhaps though the most important message we can take way from this portrait is that recovery is not about finding someone or something to blame - but rather about listening to the person with an eating disorder, encouraging them to express their feelings and understanding their need to grow.

It is also about accepting eating disorders occur within a context. Within families, peer groups and communities. And that whatever the context, it matters.

After all eating disorders do not occur out of the blue, do not descend upon an individual without reason.

I know this can sometimes be difficult for many of us to accept - there is always a fear that if context matters then someone or something is to blame - however this attitude is not helpful. Instead it is important (as those making this film seem to have understood) that any search for reasons, for explanations should focus on solving whatever problems/issues are revealed. Should focus on moving forward. On recovery.