Cultural representations of Down syndrome: how far have we come?

How do you portray a character with Down syndrome? What issues do novelists and filmmakers face when it comes to representing the lived experience of a person with an intellectual disability? This review of three films and one novel considers the portrayals presented over the last fifteen years and examines how far we have come in our capacity to create meaningful and accurate representations of Down syndrome. The works discussed include The Eighth Day, Notes on a Scandal, Water Under Water and Café de Flor.
The Eighth Day is a French film, directed by Jaco Van Dormeal it was released in 1996. The film focuses on Harry a normal and harried businessman who is at odds with his family. While driving through the countryside Harry almost runs over Georges, a man with Down syndrome. Georges is escaping from an institution that is closing and is the only one unable to join his family. After the near accident Harry accepts Georges as a passenger, but also wants to get rid of him as soon as possible. Georges however, persists in trying to forge a relationship, and eventually Harry is changed through meeting Georges, and a friendship is born.
This film portrays the person with Down syndrome as belonging nowhere-his mother is dead and he is the only resident left at the institution. In this context it is perhaps unsurprising that Harry, the man he seeks to befriend belongs nowhere. The problem however with this representation is that it perpetuates the myth that people with intellectual disabilities do not have a place they can call home, a community to which they belong and are only likely to form a friendship with a person without an intellectual disability if the so-called normal person is similarly displaced, similarly lost.
Notes on a Scandal is a British film, directed by Richard Eyre and released in 2006. In this drama Sheba, the mother of Ben, a child with Down syndrome, has an affair with one of her high school students. The role of Ben is minor, but it does serve as a moral anchor point with the film posing the question: how could the mother of a child with a disability not know right from wrong? The inference is that as the mother of a child with an intellectual disability, Sheba should have demonstrated better judgment. In this film the character with Down syndrome is portrayed as having a home, and belonging, a very different scenario to the character in The Eighth Day. And it is Sheba, Ben’s mother who is seen as jeopardising this sense of belonging. This film perpetuates the message that as the mother of a child with a disability Sheba should be a saint, and that her failing her family is unforgiveable.
Café de Flor is a French-Canadian art house movie by Jean-Marc Vallée and was released in 2012. The character with Down syndrome is Laurent a seven-year-old boy. However unlike the two previous examples, Café de Flor requires far more effort on behalf of the viewer to understand the meaning of the role Laurent plays and get the film in which two seemingly unrelated stories cut back and forth to one another throughout the film.
Story 1: Set in present day Montreal, Carole is inconsolable and is unable to move on in life without her ex-husband Antoine a man she considers her soul mate, her one and only.
Story 2: Set in late-60s Paris, Jacqueline is a brave and feisty single mother raising Laurent a young boy with Down syndrome. Her husband left because he did not want to parent a child with a disability however Jacqueline is fiercely determined to provide Laurent with as normal a life as possible. The ferocity of her love for Laurent is palpable and the depth of their love is tested when Laurent meets another young girl with Down syndrome. Jacqueline is threatened by Laurent’s desire to love another and will do anything to make sure she remains the centre of his life–a desire which is at odds with her wanting him to lead as normal a life as possible.
Jacqueline and Carole both struggle with the experience of extreme and profound love. And we watch as they deal with what they both perceive to be unbearable loss: Carole her husband, Jacqueline her son.
How is Down syndrome represented? Laurent is quite simply adorable, but it is one of the opening scenes of Café de Flor where the meaning of what it means to live with an intellectual disability is lifted to a higher plane. We see thirty to forty people with Down syndrome walk towards us and through what appears to be an airport arrivals’ gate. The scene is mesmerizing and in the light of the movie’s climax could be read as a pro-life statement.
In the film the two women make different choices; Carole decides to mourn her loss and move forward (evident in attending her ex-husband’s wedding) whereas Jacqueline makes a decision that will prove disastrous for her, Laurent and the young girl.
The importance of forgiveness is paramount in the film and one of its many layers would seem to be that by publicly choosing not to welcome people with Down syndrome into our society we all lose.
Water Under Water is a novel written by Peter Rix and released in 2011. The main character Tom has Down syndrome. Significantly, in this depiction of a character with Down syndrome Tom’s disability is secondary. Tom is presented as capable of making his own decisions about his life, including what is and isn’t risky. His parents Jim and Fran continuously struggle to know how much independence to give their son, and Jim also struggles to love this son as he does his other son, and it is a weekend of white water rafting that puts his love to the test. In the tragedy that occurs that weekend, and in the novel as a whole, the character with an intellectual disability has a voice that is loud, clear and ultimately his own.
Water Under Water is groundbreaking: not only does Tom belong, but also he is encouraged to forge his own way forward in life. The novel presents a person with an intellectual disability as living a full and conventional life, not one wrapped in a protective disability bubble.
So how far have we come over the last fifteen years? I would argue there have been significant changes in the way Down syndrome is represented. No longer are filmmakers or writers choosing to present viewers and readers with a character that matches the conventional understandings and ideas about intellectual disability. Instead films such as Café de Flor and books like Water Under Water are challenging our assumptions about the lived experience of a person with an intellectual disability: no longer are they depicted as objects of pity, but rather, complex subjects in charge of their own lives.

The movies reviewed here are available at arthouse DVD stores.

First published in Voice, August 2012

Starting school; what I wish I had been told

As my son Fraser finishes Year 9 and is about to enter the last two years of high school what insights or tips do I have for new parents and those about to start school? Looking back for us one of our better decisions was to initially send Fraser to the same school as his brothers. This helped in a variety of ways including:

  • because Fraser was my middle child I got to know all the staff and the school routine before he started school
  • the staff were engaged with my family as a whole and this meant a lot to me as a mother
  • Fraser was included in a mainstream environment

There were though teething issues and in sharing these with you I hope it may make your journey that little bit smoother. First, whatever option you choose it has to work for both you and your child. When you walk into the school it has to feel right – be it mainstream or a special school there needs to be a feeling of ‘rightness’ of it fitting in with what you value in a school. In our case it was the fact Fraser could start at the school in pre-school which meant by kindergarten he would know most of the children, and second the school was willing to support him – which for Fraser meant a full time aide. It was also a gentle and nurturing school and a right fit for our eldest child. This didn’t mean however it was plain sailing – we had our fair share of bush fires, of emergency meetings when would fear Fraser would be asked to leave the school, our fair share of needing to bring in outside professionals to help the school cater for Fraser and our fair share of other parents not at first being happy Fraser was in their class.
Needless to say we dealt with all these, one by one and eventually parents wanted their child to be in Fraser’s class not simply because they would be exposed to a life lived differently but also because they realised the full time aide was a plus for all the children in Fraser’s class.
At each transition, from infants to primary, primary to high school we had to re-evaluate our decision and work out if the school was still the right fit – and it was Year 9 when we realised Fraser needed to be with his peers more than he did children without a disability. It was not what we expected to feel – we had thought Fraser would stay mainstreamed – but when we looked at the local support unit we realised Fraser belonged there more than he did his current school. He was by this stage sixteen and ready to be at a school different to his brothers – I too was ready, as the eldest was about to finish school and the youngest was also changing schools.
The transition from the school he had been at since the age of four was exceptionally well done – his current and future school co-operating to create a seamless path from one to the other with Fraser attending his new school once a week for six weeks before finally swapping over.
I was initially worried he would refuse to go to his new school because he loved his old one and as a way of letting me know this he had started sleeping in his school uniform blazer and all. However the teacher at the new school was fantastic and let him wear his old school uniform until he felt ready to change into his new school’s uniform. For me it was hard to leave because I had relied on the support of the old school so heavily in the early years but now six weeks down the track at our new school I know we have made the right decision for Fraser and for us.
However even a year ago if you had told me I would want to change schools I would have been doubtful, I would have baulked at what I would have then seen as the opposite of inclusion – now however I realise Fraser is included in his own peer group which is then included in the larger body of the school, that he needs those same peer relationships if he is to have friends and a social life.
The tricky bit I see ahead is when his younger brother will be on holidays soon (read independent school) yet Fraser will still have another two weeks at school. Will I be able to get Fraser to school? Or will his younger brother keep him up at night and encourage a holiday lifestyle that means Fraser won’t want to go? Or perhaps will Fraser be so happy at his new school he won’t want to miss a day. I am yet to find out. What I do know though is I am glad I have been able to go with the flow and accept the changes we have made as right, that needs do change over time and being responsive to these changes is paramount.

Mainstream or special school? Our decision for the latter years of high school

Fraser, our middle so with Down syndrome is reaching the latter high school years, the more academic years, and it seems to us as parents there is a decision to be made. Should we stay in the mainstream setting he has been a part of since the age of four or should we transition him to a support unit for students with a moderate intellectual disability?
As many parents of a child with an intellectual disability will know, the debate surrounding whether to mainstream or choose a ‘special’ setting is fraught. There are no easy answers. Furthermore even at the best of times transitions can be difficult. In my case simply getting Fraser to school on some days has taken an enormous amount of planning, patience and finessing. Not to mention the further assistance required by staff to cajole him out of the car, then back into his shoes and socks, and into the classroom without taking any major detours. In other words transitions are not to be taken lightly.
Fraser has been at his current school since pre-school and is now sixteen and in Year 9. That’s twelve years in the one environment. Twelve years at an institution that has, on the whole, proudly engaged with him and worked to ensure he has the social and educational attributes necessary for a ‘successful’ life.
Of course there have been times the school has struggled to meaningfully include him, struggled to understand their role in his upbringing, but overall he has blossomed.

Why we chose a mainstream school?

We chose a mainstream environment because we wanted our three boys to attend the same school. To have the same opportunities. We chose his particular school (a non-government school), because it was willing to accept when Fraser at a time when the public system was not actively encouraging a mainstream education for children with disabilities.
The non-government school was willing to employ an aide full –time and Fraser was included in a mainstream class from pre-school to Year 6. From years 7 to 9 however he has spent much of his time in a small support unit with one other boy with Down syndrome. It is a very individualized and very nurturing program and he does still mix with the boys in his year but in some ways we are beginning to think it is too nurturing. Too nurturing in that he spends the majority of his time with staff who ‘love’ him and possibly too far away from the world of disability and his peers.
Too far away from disability? Yes, it may seem odd given our strong desire to have him included, but now we also realize he need peers similar to himself. That he needs to be just one of the group and not someone special. Not someone who is special in the mainstream. That he now needs to find his own way of being special within a group of his peers.
During this time of intense questioning about Fraser’s future educational and social needs for Years 10 – 12 it comes to our attention that the local public high school support unit for children with a moderate intellectual disability has turned itself around 180 degrees and is now a centre of excellence. And fortunately for us, because Fraser attends an after school program at our local community centre he knows many of the children who attend the school.
Could it be we ask ourselves time for Fraser to join them? One sticking point, one thing that holds us back is that is Fraser loves where he is. Loves it to the depths of his heart. But after discussions with the teacher who runs the unit we decide to let Fraser spend a day there and see how it goes. He seems to enjoy himself but later when I suggest he swap schools he shakes his head vehemently and in order to let me know how he feels begins to sleep in his school uniform. Blazer, tie, shirt . . . everything but his shoes! As though if he doesn’t take it off Mum can’t change anything.
We are in a quandary, what is best for Fraser? As we mull over the issues, including how expensive an education at a non-government school has now become we begin to realize his current school has probably given him everything it can.
He has been included, has been educated in a mainstream environment for as long as possible, has been nurtured. Furthermore I will always say the support at the school made it possible for me to have a third child. Without any family I relied on the staff so much in those early years and they did rise to the challenge day after day. But now the boys are older we have probably seen all the benefits we are likely to see and perhaps there are benefits to be had by changing.
The staff at Fraser’s current school appreciate our dilemma and are supportive of whatever decision we make. However it isn’t quite that straightforward to gain a place at the support unit – not only does Fraser have to be classified as having a moderate intellectual disability but the intake panel have to accept his enrolment and there has to be a place. I tackle each of these obstacles one by one, and finally, finally we are offered a place. We are as thrilled as when we chose his current school.
Fraser is now going to spend some time transitioning and does seem happy on the days he visits his new school – but I worry he sees it as an excursion and not something that will eventually be permanent. I don’t know how he will react when it comes to leaving the place he has known since pre-school. To not wearing his beloved Blazer and tie.
But I do know he has to transition out of his current school sometime and that bringing it forward is probably in his best interests. After all if we leave him where he is, he will be nineteen when he has to say goodbye and by then it could be even harder, especially if he is not integrated into the world of disability.