My goal is to prevent those who have suffered trauma from being reduced to a statistic.
Introduction
What does it mean to be a person with disability? Too often, it means more than simply negotiating the disability itself, but also managing the social and psychological stigmas and prejudices that frequently accompany it.
The World Health Organisation defines disabilities as “impairments, activity limitations, and participation restrictions”. That is, disability involves three distinct issues. There is some form of problem in the physical or cognitive functioning of the individual’s body, which in turn may limit their ability to perform certain actions or engage in certain activities. However, it also affects the way that the disabled individual is perceived by others who do not have a disability. This can lead to significant underestimation of their capabilities and constrain their ability to interact with the wider society. Consequently, as the World Health Organisation goes on to say: “Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers.”
For many years, the Australian photographic artist Belinda Mason has worked to challenge and help to remove those environmental and social barriers. Her approach is one of offering a voice and an image to those who seldom find a place in the public consciousness and, when they do, suffer the indignity of being considered somehow less-than-whole human beings. Her extensive creative output has addressed a range of human conditions – grief, body image, identity, aging and family – paying tribute to, and fighting for, the rights of those on the margins of the contemporary Western norm. The gravity of her subject matter means that each body of work requires extended consideration. There are simply too many projects to be able to cover them all in one short interview. So, here we focused our conversation on two photographic series created a couple of decades apart: the first, made early in her career, is ‘Intimate Encounters’; the second, ‘Silent Tears’, is an ongoing project made in collaboration with the videographer, Dieter Knierim, and the Diversity Consultant and former Paralympian, Denise Beckwith. While, both series address issues faced by people with disability, they explore very different situations and employ different aesthetic methodologies to achieve their powerful and poignant effect.
Alasdair Foster
Nick Hogan, Sydney. Nick would like “a family – marriage, children, the whole thing”. He has Down’s syndrome.
Interview
How would you describe your relationship to image-making and communicating: your ‘way of seeing’?
For some strange reason, people seem to imagine that a photographer does not think or feel. Our craft makes us silent. We work in silence. Our images are silent. Those images are observed in silence… What is not silent is the response of the audience. In my experience, a tsunami of public opinion engulfs the photographer and their subject, drowning them in the judgement of others. All too easily, we – photographers and those we photograph – become voiceless and objectified; unable to share what we have borne witness to. My goal is to prevent those who have suffered trauma from being reduced to a statistic. I want to bring the human face of their lived experience to a world that will not ‘look them in the eye’.
[Upper Left] © Belinda Mason ‘Perceptions’ 2000 from the series ‘Intimate Encounters’
– David Abello and David Urquhart, Sydney. David Abello is a social scientist. He has a psychiatric disability. David Urquhart is a social activist. He has hearing loss, chronic hypertension and posterior disc protrusion.
[Lower Left] © Belinda Mason ‘Moment’ 2001 from the series ‘Intimate Encounters’
– David Toole and Cherylee Houston, Manchester, UK. David is a dancer, actor and workshop leader. He has no legs due to complications at birth.
[Right] © Belinda Mason ‘The Yearning’ 2000 from the series ‘Intimate Encounters’
– Heather Rose was a screenwriter and actor. She had cerebral palsy and was unable to speak or live independently. She passed away in 2002 at the age of 36.
You have made, and continue to make, many series. Given our limited space for this interview, I have selected just two to explore here. Made some twenty years apart, they both have powerful messages to convey about issues that make many people feel uncomfortable. The first series, which explores the sexuality of people with a range of disabilities, is called ‘Intimate Encounters’. How did this project begin?
Naively. At the time, I had no idea there was an overriding public perception that people with disability are (or should be) non-sexual beings. This realisation came as a surprise to me, because my own upbringing had been very inclusive and open to human diversity.
In 1998, I photographed an event for the Australian Government on the theme of sexuality and disability. It was this experience that gave me the idea for ‘Intimate Encounters’. What the event made clear was the detrimental impact on people with disability arising from the assumption that they were non-sexual beings. I began to contact people with disability who wanted to change this perception and were willing to share their lived experience of intimacy, body image and sexuality through being photographed. The resulting exhibition sought to change public attitudes as the participants exposed not only their bodies but also their ‘souls’ as a way of demystifying their personal lives.
Of course, disabled people are not a homogenous group and it was important to show the diversity of disability, sexuality and lived experience. Consequently, the project was inclusive of people with a range of disabilities: congenital, acquired, sensory, physical, intellectual and psycho-social.
[Left] © Belinda Mason ‘And Thomas’ 2000 from the series ‘Intimate Encounters’
– Gerry and Louise Hewson with unborn Thomas, Sydney. Gerry is a Paralympian wheelchair basketball player.
[Upper Right] © Belinda Mason ‘Lucky Strike’ 2000 from the series ‘Intimate Encounters’
– Robert and Julie Strike with their children Amanda Lee, Bradley and Casandra, Sydney. Both Robert and Julie have intellectual disability.
[Lower Right] © Belinda Mason ‘Tom’ 2001 from the series ‘Intimate Encounters’
– Tom Shakespeare is the Director of Outreach for the Policy, Ethics and Life Sciences Research Centre at the University of Newcastle, UK. Tom has achondroplasia.
These images take a variety of distinctly different aesthetic approaches. Why was this?
Those decisions were shaped by the process and by the participants. Before we began photographing, I spoke at length with each person. I did not use a camera, notebook or recording device. It was just a series of friendly and honest conversations about life and love. The participants did not describe anything visually. It was the intensity of their words and emotions that I later translated into images.
Each artwork is filled with symbols of their lives, these included what they wore, the location and objects in the image. Our conversations also informed my choice of the size of the image, whether it was colour or black and white, and whether it was documentary or surrealist in style.
Yes, I remember the first time I saw the exhibition wondering if it was a group show by several photographers…
That stylistic diversity was not my original intent. It evolved organically because each person was so different from the next. Each person – their character and relationship – painted an entirely new picture in my head.
I found that stylistic diversity particularly poignant when comparing the image of Caroline Bowditch [‘Little Devil’] and that of George Taleporos [‘Friend or Foe’].
Caroline is a bold and vivacious woman who identifies as bisexual. We lived in different cities, and so our preliminary conversations were by telephone. Although we didn’t meet until the day of the photoshoot, it felt like we already knew each other because we had already shared so much.
The final image was printed larger than life (two metres high). What we see first is her mix of beauty and personality – her voluptuous breasts and red smiling lips, her sexual appeal. It is only later that we notice the wheelchair. Caroline wanted to be seen first as a vibrant sexual person… one who happens to have a disability.
© Belinda Mason ‘Little Devil’ 2000 from the series ‘Intimate Encounters’
– Caroline Bowditch, Melbourne. Caroline is Secretary of the Genetic Support Network of Victoria, a Training Coordinator at Arts Access (Victoria), the Co-convenor of the Victorian Women with Disability Advisory Committee and performs with Weave Movement Theatre. She has osteogenesis imperfecta (brittle bone disease).
The image of George Taleporos is very different…
George is a Doctor of Psychology and advocate for people with disabilities. Initially, he was reluctant to be involved beyond being an advisor to the project. It was only after seeing the work exhibited for the first time that he decided to be photographed. I can still hear his voice when he asked me: “am I garbage in your visual landscape?” Those few words evoked such a strong image. The man lifting George up while simultaneously stepping on him is representative of a physical idealisation of manhood… and yet, ironically, that second man was later to die of a drug overdose in unexplained circumstances. George’s continuing contribution as a disabilities advocate is lifelong. Just as the image portrays, he has been supported by those who recognised his abilities and acknowledge their own limitations.
© Belinda Mason ‘Friend or Foe’ 2004 from the series ‘Intimate Encounters’
– George Taleporos, Melbourne. George is a disability activist and academic. He has spinal muscular atrophy.
‘Intimate Encounters’ toured widely, going into smaller regional communities as well as big-city galleries. How was it received by the public and media?
Fifteen per cent of the global population identify as disabled. Disability does not discriminate. Sadly, some people do. ‘Intimate Encounters’ was described as “disgusting” and was banned from some venues. The media and disability community rallied against this verbal abuse and the exhibition went on to tour thirty-three galleries across Australia over seven years. The last time it was shown was in 2018 in Sydney and in Auckland (New Zealand). The exhibition is still making an impression and changing the perceptions about the lives of people with disability. ‘Intimate Encounters – Twenty Years On’ – a documentary film by Dieter Knierim that revisits a number of the original participants two decades later – screened at Sydney Film Festival in 2018 and is now showing on ABC iView.
Clearly, the ethical integrity of your work is very important for you.
Ethics should be an innate part of all creative processes. No story or image is worth jeopardising the wellbeing of a participant. If there is any question of ethics being undermined, walk away. Clear boundaries to define one’s own ethics need to be preinstalled into the creative process.
Now, many decades later, she feels able to reveal for the first time the on-going sexual violence she endured as a child with a physical disability. The perpetrator no longer threatens her, yet the psychological trauma forces her to remain anonymous. She is one of many women still trying to make sense of what happened to them and come to terms with the abuses of the past.
The more recent series for which you are now well-known is ‘Silent Tears’. What is this about and how did you come to begin it?
The idea for the project ‘Silent Tears’ was born from Australia’s 2013 ratification of the Convention of the Rights of Persons with Disabilities. I became aware of how little public awareness there was about violence against people with disability; in particular, women with disability. I realised that the only way to engage the general public about the topic was to find a point of connection. That point occurs when women acquire disability caused by violence. These women form the bridge between the able-bodied world and the world of disability. Once established, this connection allows for the conversation to be expanded beyond sexual and physical violence to ensure the inclusion of violence that specifically targets women with disability: domestic violence, sexual assault, neglect, forced sterilisation, economic and psychological control and so on.
This once strong and proud Aboriginal woman – a mother, daughter, aunt and sister – was brutally beaten by her husband. She acquired brain injury, vision impairment and physical disability as a result of that domestic violence. Her husband was a young war veteran who served in the army for more than ten years and was still only in his thirties. She has become the collateral damage of her husband’s post-traumatic stress disorder (PTSD).
This is a difficult subject to represent visually, partly because it is psychological and partly because it is often necessary to maintain anonymity for the individual concerned. How did you resolve those challenges?
Many of the women I approached were initially wary about participating. For years they had remained invisible within their communities, living behind a façade of normality. What gave them the confidence to participate was that the process of making the work gave them the ability to choose how much (or how little) of their identity was revealed. Some women used their full names, others used pseudonyms. It depended on how much they felt that they would be exposed to further violence by those who had abused them.
I used water as a visual metaphor – a symbol of the tears that they had cried – to diffuse or disguise their identity. The resulting images were printed on clear acrylic sheets. These were suspended within the gallery space, away from the gallery walls. The transparent quality of the images echoed the way the women’s disability was visible yet invisible within their communities. Hung in open space, audiences walk around the artworks in the same way they walk around the women in their daily lives.
Carolyn Dewaegeneire went into hospital to have a small sore removed from her genital area. When she awoke from the anaesthetic, she found that the surgeon had cut away her entire external genitalia. Later, Carolyn read in the newspaper that he had had his license to practice as a doctor revoked, having mutilated other women for no medical reason. The doctor was not prosecuted because the State Health Care Complaints Commission said it had other priorities.
What kind of challenges did you face in working on this project?
The challenges did not come from the participants, they came from perpetrators of the abuse who wished to prevent these stories being heard. This was difficult to manage for all of us, but we were protected by the Australian legal system and the project remained within the boundaries of the law. However, the exhibition highlighted the lack of community support for people with disability who experience violence and, in turn, the lack of governmental support. No-one wanted to know. It was not until late 2018 that a long-overdue Royal Commission into violence against disabled people was initiated. [A Royal Commission is a government initiated public enquiry with extensive powers to gather the information necessary to complete its investigation.]
At five years old, Lesley was hit by a car injuring her brain and leaving her with an intellectual and psychosocial impairment. While growing up Lesley experienced physical and emotional abuse from her family and at fifteen, she was forcibly sterilised. As an adult, she has survived several abusive relationships. The violence was perpetrated by boyfriends and men she was forced to live with in a boarding house for people with disability. Despite this, Lesley is a happy woman and a proud aunty to her nieces and nephews. She lives alone with her collection of prams, dolls and teddy bears.
What kind of response to the work have you had from the women who took part in ‘Silent Tears’?
They have expressed a sense of empowerment by being given an opportunity to share their stories in an unquestioned way. The foundation on which this process was based was that the truth of their personal stories was accepted; the participants were not required to justify their experience. It was absolutely clear to them that their experiences were real. It was also absolutely clear that, in the past, other people had not believed them. By sharing their stories, the project brought a strong sense of validation for the participants, which in turn supported their healing process.
What was the most unexpected audience response that you have had to this work?
What was not surprising was the large number of people who spoke to me after seeing the work to confide that they too are survivors of violence. What I had not expected was to discover how many people did not even know the issue existed and, in contrast, those people who do understand the topic but feel that only they can speak on behalf of the women. While I can understand some people may not be aware of this issue of violence against women with disability, I am very surprised that people, from various strata of the community, are devoid of any knowledge of disability.
“As women, we are the only ones that can carry two spirits. So we have to teach our men, we have to empower them. Our men have been affected by this oppression too, and they learnt western ways too. So, as women – the strength that we have – we are the teachers too … and the carers for life.” Michele Mass, Chippewa, USA.
This series has done a lot more than simply tour art galleries. How have you used this exhibition to bring these issues to wider international attention?
‘Silent Tears’ was shown in conjunction with a number of United Nations events. In 2016, during the UN Commission on the Status of Women in New York, I partnered with CBM International [an international development organisation devoted to improving the lives of people with disabilities], the Australian Human Rights Commission and the Australian Government to host an event to discuss the topic of women who acquire disability caused by violence and women with disability who are subjected to violence. Five of the participants from Australia accompanied me so that they could personally share their stories during the forum. Their presence ensured the human face of this issue was not lost within the statistics. Dieter Knierim and Denise Beckwith, artists with whom I had collaborated on this project, also attended and spoke at the event.
That event led to an invitation to speak at the Convention of the Rights of Persons with Disabilities at the United Nations in Geneva. This presentation allowed the project to extent internationally and Dieter, Denise and I travelled to seventeen countries over the next eighteen months, resulting in the project becoming a global platform for women with disability.
In 2018, ‘Silent Tears’ returned to the United Nations Commission on the Status of Women, presenting two forums on the topic. The global exhibition was presented across three New York galleries with an article about the project published in Forbes magazine.
What have you learned about yourself in the process of creating your work?
I have learnt that my normal – which is a world filled with diversity – is not everybody’s normal. Some people may not feel comfortable in my world; but I feel uncomfortable in their world too. I do hope that, in looking at my work and engaging with the lives of the people represented, viewers will identify with the humanity we all share, rather than focusing on individual differences. If we do that, none of us need feel threatened or out-of-place.
Jacky was a dance teacher in Guatemala when a traumatic incident left her in hospital. She became depressed and her psychologist introduced her to a man who happened to be visiting. He had been shot several times leaving him unable to walk. The two became friends and then married. Today, he is a wheelchair basketball player, and she has returned to dancing. Jacky says: “I feel like you can do anything once you have the support of your family … You have to do the best for your life, your community, your society and your country.”
Biographical Notes
Belinda Mason was born in Tailem Bend, South Australia. She holds a bachelor’s degree in communications, a graduate certificate in human rights, and is currently undertaking a master’s in human rights. For twenty years, Belinda Mason has created and presented high-quality socio-culturally engaged art exhibitions and events for national and international audiences. From 2001 to 2017, her first major exhibition, ‘Intimate Encounters’, toured to every metropolitan and key regional city across Australia (thirty-three venues in all) and internationally to nine cities worldwide including Auckland, Barcelona, London, New York and Toronto. ‘Silent Tears’ has extended globally to include the stories of women from Canada, Ecuador, Germany, Guatemala, India, Indonesia, Italy, Korea, Mali, Mexico, the Netherland, New Zealand, South Africa, USA and West Africa.
She has won numerous accolades, among them Australia’s richest photography award, the Moran Prize, and the 2008 Australian Human Rights Commission Photography Award under the theme of ‘dignity and justice for all of us’. On five separate occasions she has presented her work at the United Nations: the UN 24th Session of the Human Rights Council (2013); the World Conference on Indigenous Persons (2014); twice for the Commission on the Status of Women at the UN in New York (2016 and 2018) and once at UN Geneva during the tenth anniversary of the Convention of the Rights of Persons with Disability (2016). She lives and works in Sydney.
photo © Dieter Knierim
This article was initially published in Chinese, in the August 2019 issue of PhotoWorld magazine, Beijing. The theme for the year was Ways of Seeing.