03 February 2015
Guest Blogger: Catia Malaquias
When my son Julius was born and I was told that he had Down syndrome, I felt that I had no reference point for what his life and our life as a family might look like. I didn’t know anyone with Down syndrome or intellectual disability and my early encounters were mostly with medical professionals who gave me “textbook” information about the medical “risks” associated with Down syndrome but knew very little about people with Down syndrome and especially what it is to live with intellectual disability. And I found that in that place, fear and myth lurked and thrived.
But as the mother of a newborn baby and a 2 year old, I got to watch children’s television and, somewhat surprisingly, it was there that I found what I most needed at that time.
I didn’t notice him straight away but there he was – a young boy with Down syndrome reading out the Alphabet on Sesame Street. After that, I kept my eyes peeled during every show; a young girl using a wheelchair who appeared in the show’s opening, a young boy with Down syndrome playing baseball, a Deaf girl signing “Happy Birthday”, other children and adults with disability all sharing “The Street”. To see children with disability regularly included in a mainstream TV show, learning and playing alongside their peers and being a part of their community without being exceptionalised because of their disability did more to challenge my fears and lift my expectations for Julius than just about anything that anyone said to me at that time. On Sesame Street, and in real life, disability is natural and just a part of the human variability what makes each of us unique./
However, because the positive representation of people with disability on our screens barely seemed to go beyond that particular TV show, it also highlighted the almost complete and statistics-defying absence of people with disability from mainstream media in general; an absence that is arguably almost as damaging as any negative portrayal in that it reflects and reinforces a history and culture of exclusion and segregation of people with disability.
This is one of the reasons why I have supported the mission of the Attitude Foundation – of “portraying and facilitating a positive and empowering attitude towards people with disability in the media (…) to change attitudes across Australia and start the conversation to relieve discrimination” – because I agree with its premise that the portrayal of people with disability in the media provides one of the most powerful tools available to challenge cultural perspectives on disability and accelerate progress towards a fairer and more inclusive society.
For children growing up with disability or difference and developing their individual identities, seeing others who share a similar experience portrayed in a positive manner in the media, can also provide crucial self-validation and empowerment. As a parent, I want all my children to be exposed to positive role-models with whom they can identify as well as role-models who can teach them about the value of human diversity.
The documentary series project by the Attitude Foundation aims not only to give a media voice and presence to people with disability but also to tackle broader community attitudes about disability. In that sense, it proposes to be not only a vehicle for educating the Australian public about disability but also a platform for individual empowerment and self-advocacy for Australians with disability.
Another significant aspect of the project is the Attitude Foundation’s plan to use the production of the series as a vehicle to train people with disability in media with a view to applying those skills elsewhere in our media industry. In this way, the mission to change attitudes can be extended beyond the impact of the Attitude documentaries themselves.
There has been some discussion in blogs and social media about the need to represent different types or experiences of disability in the Attitude series and I agree with those views. We need to see physical diversity as well as neurodiversity and hear the voices of people with physical or mobility impairments, people with sensory, cognitive or intellectual impairments, people with diverse appearance, people with acquired disability and people who have lived with disability from birth - in their own words or, in appropriate situations such as when age or a communication disability would make it very difficult for someone to tell their story in their own words, through those closest to them. Having looked through Attitude TV (NZ) website, that diversity appears to be reflected across its body of work.
But diversity is not enough. In addition, the Attitude series cannot afford to get the fundamental nature of the portrayal of disability wrong. The most recent episode of the Attitude series “Unlocking Autism” has been the subject of criticism and in my view it did not reflect the Attitude Foundation’s mission of positive and empowering portrayal of disability. Rather, it reflected an outdated “medical” perspective on autism and portrayed autistic people as “broken”. Most importantly, the autistic children in the show were effectively “props” in a story that was not about them as people but about how others felt about autism as a “disorder” and their medical quest to “cure” it. Sadly, it reminded me of common narratives for Down syndrome and other intellectual disability where the experience and perspective of those who live with disability is frequently overlooked in favour of the perspective of parents or carers and the endless search for therapies and “treatments”. While the voices of parents and families of people with disability are also valid, they must not overwhelm or drown out the voices of their children or loved ones regardless of communication or intellectual impairment.
This latest episode stood in contrast to the first episode in the series, which I felt captured what each episode in the series should aim to be: a positive and empowering story, preferably told in the first person. There are many outstanding episodes produced by Attitude TV, such as “The Naughty Corner” (about growing up with an intellectual disability) and “Dean Finds His Voice” (about being young and Deaf and developing confidence in your own skin). Similarly, the “20 Years 20 Stories” produced by Attitude TV for the Australian Human Rights Commission when Graeme Innes was the Disability Discrimination Commissioner was excellent.
What this has highlighted for me is both the enormous potential of the Australian Attitude series project to produce high quality disability content for Australian mainstream TV but equally the need for the Attitude Foundation to develop strong guidelines and active editorial oversight to ensure that each and every episode in the new series is faithful to its stated mission.
I donated to the crowd funding campaign after watching the first episode and I am hopeful that we will see an Australia documentary series and that it will showcase diversity, empower those telling their stories as well as others living with disability who may identify with them, challenge the attitudes and perspectives of the viewing public and help train and establish media professionals with disability who will carry forward the mission of shaping cultural attitudes through their work.
Catia Malaquias is the mother of 3 young children and a lawyer and she serves on the boards of Down Syndrome Australia and Down Syndrome WA. She has also founded the “Starting With Julius” project as an initiative to encourage diversity and the inclusion of people with disability in mainstream advertising. Her views as expressed here are personal and do not purport to represent any other entity or organization. You can follow Catia on twitter @CatiaMalaquias.