World Down Syndrome Day 21 March 2016, United Nations, New York
POWERING INCLUSION: CHANGING CULTURAL PERSPECTIVES OF DOWN SYNDROME AND DISABILITY THROUGH INCLUSIVE IMAGERY AND MESSAGES
* The following speech was delivered by Catia Malaquias on World Down Syndrome Day, 21 March 2016, at the United Nations Headquarters in New York.
Good afternoon and thank you for the introduction.
I am also the proud mum of 3 young children, 8 year-old Laura who has come from Australia with me, 6 year-old Julius, who has Down syndrome, and 4 year-old Drea.
It’s an honour to speak to you today, but before beginning I would like to acknowledge all the self-advocates who have spoken – because it is people with Down syndrome who hold the greatest power to shift attitudes and the discriminatory burden of history.
And it is with that history that I would like to start – because it is by acknowledging the past and understanding how it is connected with the present, that we can start to chart a way into the future, to achieve our shared vision of the realization of rights and the inclusion of people with Down syndrome.
History
It wasn’t so long ago that attitudes to Down syndrome and other disabilities were largely driven by fear, ignorance and even superstition – when people with Down syndrome were routinely institutionalised, denied family, friendship, education, love and community, in violation of just about every fundamental human right.
But in the 1970s and 1980s attitudes to disability began to change.
The decade between 1981 to 1992 was declared the United Nations “Decade of Disabled Persons” and led to the Convention on the Rights of Persons with Disabilities, which recognises the human rights of people with disability, including the right to participate and be included in every area of life.
In many countries, domestic legal and policy reforms also brought about dramatic changes for people with disability by ensuring better access to health and support services, education and employment, encouraging a move away from institutional living and bringing about a greater focus on accessibility and participation in the community.
Without a doubt, there have been incredible achievements, but almost 3 decades later, people with Down syndrome continue to face significant barriers and are among the most marginalised.
At a time of rapid development of earlier and less intrusive methods of identifying Down syndrome in pregnancy, rates of termination for Down syndrome are estimated to be around 90% in Australia and many other countries. These confronting statistics undeniably reflect how we as a society continue to devalue people with Down syndrome as a group.
Children with Down syndrome born today still face significant barriers in accessing education in regular schools. In Australia, it is estimated that 50% of children with intellectual disability, such as Down syndrome, attend segregated education. In some countries, children with Down syndrome are only allowed to attend segregated schools and in others, they are denied access to any form of education at all.
Recent statistics in the UK indicate that only around 7% of people with an intellectual disability are in any form of employment, no doubt reflecting similar statistics in Western countries such as Australia, where many people with intellectual disability work in segregated workshops for as little as $1 per hour – despite a national minimum hourly wage of $17.
So much has been achieved and yet the reality for many people with Down syndrome is a lingering “culture of low expectations”, together with associated prejudice and outdated stereotypes, that continues to undermine, compromise and delay inclusion and socio-economic advancement.
And this brings me to what I believe is perhaps the fundamental concern of our time. Now that we have achieved so much in the way of formal rights, how do we support and accelerate social inclusion of people with Down syndrome and other disability? How do we challenge the legacy of an entrenched history of segregation and dislodge unconscious bias that defaults to exclusion; the belief that people with Down syndrome should be somewhere else – in “special” schools, “special” workplaces and residing in “special” homes.
What will it take to reshape attitudes to disability and for society to revalue people with Down syndrome?
Medical Vs Diversity Paradigm
Let me share a personal perspective on this. When my son Julius was born and I was told that he had Down syndrome, my early encounters were mostly with medical professionals who gave me “textbook” information about the medical “risks” associated with Down syndrome – but who knew very little about people with Down syndrome. They presented me with the “medical model” of disability that underpins the way much of society thinks about disability; the view that any variance from the statistical “average” that we call “normal” is inherently “deficient”.
As the mother of a new baby with Down syndrome I was fortunate to connect with people who helped to challenge this limited – and limiting – perspective, but in some ways, it was in children’s television that I found what I most needed to see 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. There was also a young girl using a wheelchair 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”.
On Sesame Street, and in real life, disability is a natural part of the human condition. It is this diversity framework that must replace the “deficit” way of thinking about Down syndrome and disability.
As a family, this understanding has been no less than life changing for Julius and for all of us. It was a shift in paradigm that set us on a completely different path; on the path of pursuing an inclusive vision for our son.
What do we want for Julius? The same fundamental rights as we want for our other children – the right to be accepted and respected for who he is; the right to a quality education alongside his peers and the right to earn a living in a way that values his contribution; the right to friendships, to love and to community; the right to live a life of his choosing.
But I also know that other people’s “attitudes” and society’s negative and limiting assumptions about Down syndrome and disability create barriers that will make it harder for Julius to achieve these things.
Until cultural attitudes undergo significant transformation, people with Down syndrome and other disability will continue to experience grave social injustices; social injustices that diminish their human rights and prevent them from being fully included as equal citizens.
Changing Attitudes
But how do we do this? How do we stimulate cultural transformation to drive a paradigm shift in the way that our society thinks about Down syndrome and disability?
At one level, this happens organically, when children with Down syndrome attend regular schools and colleges, when people with Down syndrome work in regular workplaces and fully engage in family and community life. This is not only right, it is powerful demonstrative advocacy.
But of course the difficulty here is that organic opportunities to do this are themselves hampered by attitudes – the subconscious “culture of low expectations” itself limits the willingness of society’s education institutions, employers and communities to welcome and “include” people with Down syndrome.
Did you know that it is estimated that approximately 40% of non-disabled people in Western societies say they do not personally know someone with a disability, let alone Down syndrome? A more telling statistic is that over 60% of people say they feel awkward or uncomfortable around people with disability. And yet, approximately 1 in 5 people – 1 billion people of the world’s population have a disability. This is the legacy of social exclusion.
The media as a tool of change
While these challenges have no “quick” fix, we live in the age of mass media reach and the capacity of the media to shift cultural perspectives must not be underestimated.
The importance of the representation of people with disability in all aspects of the media is specifically recognised in Article 8 of the Convention – it expressly states the need to combat stereotypes and prejudice and promote positive perceptions and respect for the rights of people with disability, including by encouraging all media organs to portray people with disability in a manner consistent with the purposes of the Convention.
But how can the media actually help to achieve human rights for people with Down syndrome and other disability?
The media is a vehicle for mass communication and in that sense it has the potential to shape attitudes to disability at both an individual and cultural level, particularly where it challenges non-disabled perspectives of the experience of disability, amplifies the voices of people with disability and portrays them authentically and as equal citizens.
Academic research on the “para-social contact theory”, also known as the “Will & Grace effect”, recognized the impact of one particular TV series in changing discriminatory attitudes and paving the way for social change.
But while there are some wonderfully talented actors with Down syndrome currently working in media – Jamie Brewer, Sarah Gordy, Lauren Potter, Connor Long, our own Gerard O’Dwyer in Australia, for example, they are still too few. The most recent GLAAD report “Where We Are on TV” in fact revealed that the percentage and number of series regulars with disability on American television has dropped for the first time in two years, to less than 1%.
Regular commercial advertising too can be a powerful vehicle to communicate positive social values at a mainstream level – especially when it represents Down syndrome or disability incidentally, just as part of the framework of human diversity. While advertising is often criticised on account of some its more negative impacts, advertising can be part of “the solution” by powering diversity and inclusion through leveraging off its broad marketing reach.
Dr Beth Haller, an American media and disability scholar, has noted in her research that a shift towards better and increased representation of disability in advertising in the US and UK is tied to important anti-discrimination legislation, and suggests the potential of commercial advertising to stimulate attitude change towards people with disability.
The Starting With Julius project which I started 3 years ago after my son Julius became the first person with Down syndrome to feature in a high profile, nationwide advertising campaign in Australia, seeks to engage the community and advertisers in a conversation about diversity and inclusion.
Since then, there has been a national shift in Australia towards greater inclusion of people with Down syndrome and disability in advertising. Most recently I reached out to Kmart Australia which has just released their Easter catalogue that includes models with different disabilities, such as Down syndrome.
Social media too has provided an opportunity for people who have been unrepresented – or misrepresented – in traditional media, to project themselves on their own terms and to connect around the world to boost individual and collective activism. For example, social media supported the emergence of Australian Madeline Stuart as a professional international model with Down syndrome.
For children growing up with disability or difference and developing their individual identities, seeing others who share a similar experience, portrayed in a positive and inclusive manner in the media, can provide crucial self-validation and empowerment.
*Laura Panetta, 8 years old, also delivered a short speech about her brother Julius.
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.
To me, this is critical to powering inclusion. I believe that the positive portrayal of disability in the media has the capacity to foster in children and young people an attitude of respect for the rights and inclusion of people with disability; and to shape future citizens of the world who will go on to implement the vision of a diverse society that welcomes and includes ALL.
Visibility alone is not enough – the nature and quality of the portrayal of people with Down syndrome is just as important.
We must ensure that roles for people with Down syndrome on screen are three-dimensional and empowering – about them as a character in their own right, reflecting an authentic story, including their relationship with the world around them. Too often we see portrayals of people with Down syndrome that focus exclusively on how others feel about the disability, often parents, and present them either as an object of “inspiration” for “overcoming” their disability – or from a “pity” angle, as someone whose life is “limited” by the disability.
A wonderful example of authentic and empowering portrayal is the work of Tathiana Piancastelli, who has written and stars in her own play, “Apple of My Eye“. It tells the story of Bella and explores themes around Bella’s search for community and romantic love, including social taboos, violence and family prejudice.
In the news media too, there is a critical need to improve the way stories about people with Down syndrome are told and how the experience of disability is portrayed. Too often people with Down syndrome are underestimated and infantilized; portrayed superficially only as someone’s child or platonic friend with their individual perspective rarely explored.
This means that in using media to build cultural pathways and power our journey towards a more inclusive society, we need to encourage the media not only to do more, but to do better.
It is important to actively seek to engage with and challenge advertisers, journalists, television producers and film studios about the inclusion of people with Down syndrome in media, including removing barriers and creating platforms and opportunities.
Critically, people with Down syndrome must be given real and direct access to mass media and the opportunity and support to represent themselves authentically and to share their own personal perspectives.
The task of redefining society’s preconceptions about Down syndrome in particular ultimately belongs to people with Down syndrome themselves; because they are the ones who hold the greatest power to shift attitudes and the discriminatory burden of history.
I particularly welcome the increasingly loud voices of all the young adults with Down syndrome – some of whom I have already mentioned – who are making their presence felt in the public eye.
We should support them in every way, including by acknowledging and celebrating the individual and social significance of what they are doing, by respecting their right to to self-expression and authentic representation in mainstream media and by denouncing all forms of exclusion, not only in advertising and media but in every area of life.
Thank you.
[Cover photo © United Nations.]
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