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Return to Media Report Contents A Personal Experience: Untold Desires, a film about disabled peoples' sexuality |
Encounters with the MediaSeeking a New AestheticBy Fiona Strahan (fidel@netconnect.com.au) of Australia, a frequent consultant for disability advocacy and women's projects"Not long after my accident, a teacher told me that I must accept that I would repulse some people who saw me perform. It is hard to move unselfconsciously with this thought in my mind. Under these circumstances I intensified my search for a new aesthetic." --Janice Florence, dancer with a disability[1] BackgroundThe last 20 years of publishing has shown disabled people have stories, as every oppressed group does. The number of published anthologies from around the world shows we have them, we can tell them, and-they are interesting! Our literary culture flourishes.Yet the on-screen representation of disabled people is usually written and acted by non-disabled people, assuming what it's like to be us. The stories that get told are stories based on perceptions of disability, not the experience of disability or disablement. The able-bodied outsiders' assumptions are portrayed as truth or reality. Tragedy and isolation are often the core assumptions. The disabled person is usually alone, rarely are there other disabled comrades or a political backdrop to the disabled character's situation. The importance or the power of being with other disabled people is rarely portrayed. Where is a disabled person liberated by another disabled person? The Elephant Man is perhaps the best example, when a group of "freaks" help him escape. We are isolated, tragic and then sometimes, despite all of this, we can become heroic, in spite of all our otherness. Or, on the other hand, the representation normalises, making the person look, sound and/or behave as normal as possible. "There is the tragedy of disability, the hero overcoming or denying disability, the recovery of disability illness, the geniuses of and/or the eccentric or in Australia the oddball or the clown. All of these validate normality and invalidate disability." [2] The assumptions separate people, into us and the other. The common human experience is suffocated as these portrayals rarely explore the true personal experience. Tragic or heroic. Either upon the pedestal or below it. Heaven or hell. Yes! We need more disabled filmmakers, directors, producers and actors. We need to write the roles, poach the roles and grab the camera. We have the stories, we have the people and in doing so we can nurture and sustain a culture which has not so much been taken away but denied to us. I will make my oppression work for me With a turn and with a twist be camouflaged within stated ignorance Then rise And surprise you with my will[ 3] IntroductionThis is not an academic paper; I am not the Australian to write that. Nor is it a polemic, I could certainly write that but it is not what has been asked from me. It is more one person's perspective, her reflections on perhaps the most powerful mechanisms for representing people or not representing them; film and television.For this paper I sent seven people some questions, six responded. The questions were answered either over the phone, by e-mail or both. The people represented academia, activism, filmmaking, performing and festival organising, and some were a number of these. I chose three films-one drama and two documentaries-made by disabled people, and spoke to the organiser of High Beam 2002, a disability cultural festival, and spoke to the interviewees about the 2000 Paralympics held in Sydney and explored the attention given to one particular issue by current affairs. The films are Dance Me To My Song, Heather Rose Goes to Cannes and My One-Legged Dream Lover. Interspersed with this are my experiences as a short-statured activist, teacher and writer. I have been in a couple of documentaries-one about sexuality and one about disabled women's leadership-and have been a media spokesperson for many different rights and awareness campaigns including those concerning sterilisation, education and employment, violence. Views on the representation of disabled people in media in AustraliaMost people think it's poor to bad. Comparisons with the USA and Britain are common, with a strong sense that greater media opportunities exist and are created for and by disabled people in the USA and Britain."A distinction needs to be made between getting disability issues explored and disabled people represented."[4] It is easy to think they are the same thing, though they can certainly be covered simultaneously. There is no stand-alone program made by disabled people on taxpayer-funded television and radio (ABC, SBS), commercial television or commercial radio. The public television station Channel 31 is currently exploring its program development and focus on disability. Community radio is where we can find our stand-alone programs. 3CR, a community radio station in Melbourne has had "Raising Our Voices," a program produced and hosted by people with intellectual disability, exploring relevant issues to their community. It is also a place to learn radio production skills. CommercialsAdvertising must be the most powerful tool that can represent and misrepresent disabled people. About a year and a half ago, I was in a department store with my adult niece and was approached by a talent scout who asked if I was interested in acting. Within seconds my mind catapulted me into the leading role of a complex, passionate interesting person, perhaps Trudi from Stones of the River or Cady from Maybe the Moon. Both fantastic roles for dwarf women (see bibliography for brief description of these books).I came crashing to earth as he asked excitedly if I had seen a particular advertisement on TV for a hardware shop which had short-statured people dressed as elves dancing around being cute and silly. He handed me his card and encouraged me to give their agency a call. I don't think at this stage I had uttered a word or inhaled a breath! After 20 years of involvement in disability rights and culture I had an esteem (and perhaps ego) that saw the possibility of being the leading role in a fantastic portrayal of short-statured women, contrasted with an advertising industry which still only saw me as cute and silly. I wandered off with my niece bemoaning, "I don't want to be an elf." A few years down the track, I gave an account of this experience in an e-mail to Kath Duncan, who asked me, "well, did you ask how much you'd get paid? The rates in advertising are high." Later a literary reviewer friend asked me the same question. "Do it for the money!" someone else said. Arrgh! Are my expectations too high? The Australian Motor Vehicle Accident Authority ran a series of advertisements using Paralympians who were speaking to the camera about how you too could end up like them (and that would be completely frightful) as a result of your own drink driving/speeding or being hit by someone else in that state. Some felt the message implied that there is something far worse than death-and that is using a wheelchair...that disability is tragic, and even an elite athlete doesn't want to be disabled. The implication is also that if you use a wheelchair then you too would rather be either not disabled or dead. The MVAA was a major sponsor of the games; it's a pity they didn't portray the fulfilled lives athletes have. However, on a less visible ABC TV program, Dimensions, two athletes spoke about how much their lives had opened up since becoming disabled. Robbie Pike said, "I think I have achieved more, like, after the accident and because of the accident and I think I am a better person." 4 "On the whole, disabled people are represented as brave victims of circumstances, lonely losers, brilliant heart-warming copy, isolated. [The non-disabled people accompanying them in whatever role] are seen as noble, a one-way relationship." [6 ] Getting media attention on disability issuesIn the winter of 2002, the Australian parliament conducted a conscience debate on a bill due to be passed approving the use of unused IVF embryos for stem cell research.In the media there seemed to be only two camps, one where politicians gave examples of suffering children, young people or adults whose lives would be turned around from a cure discovered by freeing up this testing. The alarming point here was the assumption of certainty that "cure" will be found. The other camp took the higher moral ground, stating that the embryos are humans and should not be destroyed in experimentation. Some of those interviewed spoke with cynicism as desperate politicians rushed to the bedside of a disabled child or adult to speak profoundly from their heart about how cures for people "like these" will be prevented by the heartless, moralistic people who didn't want the bill to go ahead. The lobby for the bill was strong, emotions and compassionate righteousness flying high. One disability activist who was interviewed said, "if that level of interest and righteousness was channeled by the same politicians to our independence, economic security and participation in the community, we'd be one helluva liberated group." But those in the against camp were seen only to be those who represent the "right to life" movement and they perceived the embryo as a life being destroyed. So where was the voice that says "there might be something more powerful than a cure and that is the lives of disabled people might be liberated by access to education and employment, security of income and tenure, accessible transport and so on"? There is in most media a denial, a disbelief, a skepticism that a disabled person's impairment is not something they want to reject, and that for many it is the social and economic power relations in our society that oppresses. Fortunately, a few ABC Radio National programs such as Perspective and Life Matters have given voice to this view. However, the dominant images are of disabled people who want this testing in order to be cured. The backdrop is the powerful image of the disabled Christopher Reeve, who labels anyone who questions this science-even if only to doubt its success rather than its morality-as the lunatic fringe. The more philosophical or political discussions are held in the margins. It is the moral, medical and economic debates that dominate mainstream coverage. The income such science will create and the value of the patent ticks ominously, the race is on. Instead of being seen as a cost we may contribute in a bizarre way to our own elimination. So how are you feeling now? Flat perhaps? OK, something positive now, some good coverage. An interview on the ABC national 7:30 Report with Dr Tom Shakespeare, well known researcher and activist on disability, and bio-ethics and Professor Grant Sutherland, contributor to the Human Genome Project. Prof. GS: "If we can prevent the birth of handicapped individuals then I think society will be better off. I'm sure that Dr Shakespeare would prefer not to be handicapped." Dr. TS: "I'm happy the way I am. I would never have wanted to be different. And lots and lots of disabled people are saying 'Our lives are viable.' We're not tragedies. We have good quality of life. Don't assume the world will be better off without us.' " [7 ] This story was covered over the following two nights on prime-time current affairs television. Why did this media coverage work? Helen Meekosha, one of the organisers of the Disability with Attitude Conference, said: "The organisers had worked with the ABC for a year to get coverage of this conference, and the ABC filmed the whole day. There was great media follow-up and good representation of the issues. The professor's ignorance and prejudice was used positively, to our and the community's advantage. It "outed" deep-seated prejudices. So, it wasn't so much that the coverage was good or bad, but that it got coverage and engendered debate, good debate." This interview exposed the dominant prejudice "that society would be better off if we could prevent the birth of disabled people and that particular individuals with impairments such as myself or Dr Tom Shakespeare must hate the way we are and would prefer not to have those impairments-i.e., prefer not to be born. The medical and technical discourse of gene manipulation (and its media coverage) denies any space to the experiential discourse of the lived person." [7] And it is this denial of space that lies at the core of how disabled people are portrayed in film and reported in the news. The experiential is invisible, the assumed perspective of the oppressive dominates. Good Australian FilmsDance Me To My SongFirst time writer and actor Heather Rose performs in an "in your face exploration of disability, love, sexuality, body, need and the care industry."The film explores friendship, isolation, abuse and powerlessness. Heather plays Julia, a woman with cerebral palsy who lives independently using a computer to communicate and requiring the daily support of a carer, Madeline, who is a violent, controlling, manipulative very insecure woman. Julia is cluey, perceptive and knows the threat of an institution hovers not far behind her. But her spirit and sense of self is strong. She is visited twice (just in time) in the film by her wild stroppy lesbian friend and her lover with whom she can loosen up and, in a dramatic scene towards the end, they come to save the day. A man, Eddie enters the scene and begins to build a friendship and attraction to Julia. This sends Madeline around the twist and some critics say what then happens is the typical play-off of two women and one man. But it isn't that simple. The juxtaposition is of a disabled woman being far more interesting and attractive than the able-bodied woman. Disability critics say she is at the mercy of her carers and there are no other disabled people around, either as friends or political agitators. Yet due to the isolation so many disabled people experience and the potentially exploitative roles carers can play, it is perhaps horrifyingly realistic. The film went to Cannes to a standing ovation, and so did Heather Rose, who was in the running for a best actress award. Heather Rose decided that not only would she go to Cannes, but she would simultaneously make a documentary about it. In Heather Rose Goes To Cannes, Heather is the narrator and the audience gets to see her journey into writing a script, discovering her film is selected and the process of getting her to the festival. She is the narrator and centre of the documentary. This documentary shows more deeply her experience, her fears, her elation, her identity and her pride as a film maker and actor. The film also shows the access issues and organisation required to get her to Cannes and into the festival. It becomes the more powerful of the two films. She says in the end that at last she is not a burden on society; she is a contributor. I'd say she was never a burden, that is ableism at work. She is now a filmmaker and actor. My One-legged Dream LoverFeatures Australian Kath Duncan, an established broadcaster and producer. Here she is playing herself, the narrator, performer, and filmmaker who goes to Chicago to attend the National Amputee Convention and also to meet a group of amputee devotees (people with a fetish for amputees) who she has been communicating with via e-mail. Kath wants to explore what it would be like to be adored for her difference not in spite of it or rejected because of it. She finds herself more comfortable with the devotees. There are many questions she raises about belonging. Do we belong with those with whom we share the same oppression but not the same view on life, or are we home where we are adored? Kath establishes a very friendly rapport with the devotees, and they in turn are very honest and exposing about their desire. In contrast, the amputee association meeting seems dreary and unexciting. But, this may not be their fault! They are filmed as a large anonymous group in a bland conference room at dinner tables, nothing much exciting seems to be happening. It is hard to get a sense of their meeting-is it to organise politically, is it for support? There is little sense of a dynamic group. So when Kath arrives for the fancy-dress dinner in an outlandish costume, she stands out and is very different. Her devotee friends would love the costume. By contrast, the devotees are very clear in their quest, their desire. Many members of the amputee association have real concern with the hovering devotees, yet some also have a curiosity about them. Kath Duncan offers her journey to the viewer and we become the voyeur of the voyeur!It is interesting to note that here are three films made by disabled women, in which they are the main performers and the narrators. Spike Lee, the famous African-American filmmaker, "wanted films that would capture the Black experience and he was willing to do so by whatever means... He wanted to get in, rearrange the furniture-then go back and publicize the password." [9 ] Both Kath Duncan's My One-legged Dream Lover and Heather Rose's Dance Me to My Song have done this. Both are personal stories which rearrange the furniture and set a benchmark for disabled people on identity and sexuality. Both Heather and Kath are the main characters, Heather Rose acts and Kath Duncan takes us on a personal and political journey as she tries to find where she belongs. Disabled People Working in the MediaBootstrap individualism implies barriers are personal not structural so that an individual, if they really want to, can overcome these barriers. Usually alone. This gets reinforced by the heroic stories of an individual overcoming the tragedy of disability. Such portrayals individualise and normalise the experience and are told without any reference to a political movement that has fought and agitates for change. The implication is these people are held up as role models with no social or political context, so if you can't be like them it is a personal failure. Rather than perhaps that the portrayal is the illusion."Survival issues are the priority for many people-food, income, shelter." "It looks isolated and impoverished culturally and politically in comparison to Britain and U.S." "It's lonely in the media, except for community sector." "Most people would be in producing/presenting roles...this happens when mainstream funding organisations decide 'disability' is the focus." All but one interviewee felt that few inroads had been made to have disabled people working in the media: radio, TV, and film. There are many community sector (non-government) videos on education, health, and disability rights. Many have disabled people in them, and these people often have been consulted in their making. Most are not made by disabled filmmakers or edited by disabled editors. However, to get to work in the media is another issue altogether. There are a scattering of people who identify as disabled working in the mainstream media. Community radio and TV has been much more accessible, with stand-alone disability programs and good training for interested people, but a harder transition into the mainstream. The two main government-funded media in Australia are ABC (TV and radio), and SBS (TV and radio). Both have been under persistent and enormous ideological attack under the present conservative government, combined with huge financial restraints. Both have limited capacity to make documentaries, often co-funded by an outside publicly funded film body, and they show and produce good Australian documentaries which focus on disability. There are numerous barriers to disabled people moving into the media. Under three terms of the Howard government much of the infrastructure such as access and equity units to address barriers and inequity have been dismantled in conjunction with higher education fees which make it very difficult for disabled students to get into good industry recognised courses. Through disability advocacy organisations, many disabled activists have become media savvy and can represent the issues, do the media release, organise the stunt. But if the media isn't interested, and disability can be hard to make newsworthy or sexy without exploiting ourselves or each other, then it is a lonely and frustrating place to be. The general manager of High Beam told me a story in which the festival had organised a huge media stunt and at the last minute the limelight was taken by a man bitten by a shark. The media, all bar one, left town for the coast. So disabled arts was superseded by "Shark disables man." Now that is just the luck of the draw but it can push us to exploit, to give to the media the "affected individual." It is interesting that there is one name, Quentin Kenihan, in Australia as almost the one disabled Australian who makes his own films and is regularly on commercial TV. "The focus however is still about him and his disability rather than disability issues or what he is doing. So it's some exposure." High Impact EventsParalympicsThere are two completely opposite views regarding any positive impact from the 2000 Paralympics.
Most felt that on the whole the athletes failed to utilise their position for social and political gain for disabled people-there is a view of them being elite. Others felt that disabled people in the Australian community didn't use the Paralympics to raise disability issues whilst there was so much media attention. "The most commonly portrayed image of athletes is that of individual heroes who have made the best of adversity and that they are 'happy people'. " "The predominant message was seen to be 'you can make it if you really want to, despite being tragically disabled'." Photographs of athletes' heads and shoulders predominated; this was seen as an example of "normalising" the athletes bodies. One interviewee said she noticed an amazing change in young people who found her prosthesis cool. Goggin and Newell have written extensively and well on the Paralympics. They point out two main issues regarding the representation of the Olympics. Firstly, the Paralympics followed the high profile, dramatic Olympics. And that Australia didn't have a well enough recognised disabled politician, actor or musician, no Christopher Reeve as the USA has. [11 ] Perhaps the most devastating critique is "the games have taken us backward-the combination of bootstrap individualism and non-political sporting heroes normalises disabled people and implies all is well, you just have to try." High Beam Festival This is a disability cultural festival which has been held in Adelaide every two years since 1998. The festival in 2002 had fantastic coverage. Adelaide is a well known cultural city, and it has one newspaper. The workers of the festival primed and worked closely with the newspaper's arts editor in establishing an understanding of the festival and interest in covering it. The festival had a slick professional look, which they feel expressed difference in a cutting edge way. Their motto was "dare to have your perception altered." High Beam also had the accidental advantage of following a very unsuccessful and controversial Adelaide festival so the one paper was hungry for arts news. The festival emphasised the "star" quality of the performers, both international and local, and this was taken up by the media. The artists performed at mainstream art venues, and the festival organisers employed mainstream arts management teams. The message to the media was that the festival was empowering a community, giving it an artistic voice and giving voice to the language of disability culture. There were some problems getting audiences, both disabled and mainstream. The organisers are aware there are lots of access barriers for disabled people getting to venues in the evening and also being free of institutional timetables. However, one of the interviewees was less understanding and said that "disabled people should make an effort to get out, be more organised and participate." One could easily assume disposable income being an issue for many disabled people. The festival organisers feel the festival has had a positive impact on the community and some acts have moved onto other festivals so they have been an artistic stepping stone, with artists getting good positive media coverage and offers to perform at other festivals. Changes in the last 20 years and the future"I particularly dislike 'noble cripple' or 'complaining cripple' stories on current affairs, but acknowledge that the hackneyed way of screening and editing us is probably as good as it gets unless we get some heavy politicking done to change the equation. It is interesting to note though the portrayal of Australia's indigenous people has improved greatly, but us cripples are still Lear's fools, sexy psychiatric nymphos, desperadoes after 'the cure' to take away our impairments.""It is harder to get up many stories in the media. In part this is because many people assume everything is ok-that all buildings are accessible-perception. Because more and more news stories are syndicated, there is less time on radio or TV, and less space to run local stories." On the other hand, the Internet and community radio offer lots of scope for "dedicated" media. So it's not all down hill. "Also, many journalists now have some experience with aging and disability through family and friends or their own aging, so are more open to this [disability] angle." There have been some thoughtful (and helpful to disability rights) articles by print journalists who have found a family member who was institutionalised many years before. However, pessimism predominates: "I don't think it [media representation of disabled people] has changed in recent years under the influence of the Howard government." What has changed in the last 20 years is the development of disability cultural events. The disability arts culture is growing with arts organisations in most states and events, often in conjunction or alongside other festivals. ConclusionAnd now the biggest question is to ourselves: what do we want and what are we going to do about it? Do we want to be reflected in the media as the diverse, similar, complex, dull people we may be (like the rest of the world)? Do we want our own media or both? Is it more important to try to change the existing oppressions or go off and make our own stuff to stand next to other presentations on its own merits?Most people say it's both: we need to build connections between the film industry and disabled people and we need to make our own stuff. Disability culture is flourishing in dance, music, theatre and writing and growing in strength. Yet in the film section of the 2002 High Beam Festival not one film was Australian. As our Australian disability culture develops and its impact and visibility is felt and appreciated, then filmmaking may be the "last cab off the rank." If our goal is to have a fully inclusive cultural community that values people for their differences as much as their similarities in which our own cultural identity is dynamic and diverse and we can contribute to our society's general cultural community, then we need, as Darke says, "to undertake our own theoretical and creative work in all forms of the media." [12 ] Shoulds are easy to envisage, but harder to enact. Some suggestions for how to support and develop such visions and experiences in Australia are:
So do we. Bibliography
Personal communicationsInterviews were conducted by phone and e-mail for the writing of this paper with Helen Meekosha, Kath Duncan, Gerard Goggin, Christopher Newell, Jeff Heath and Jayne Boase. Stones from the River, by Ursula Hegi, is set in a fictional town in Germany between 1915 and 1951. Trudi is a Zwerg, German for dwarf. She is set apart in the community because of her "otherness," yet she finds her place or her power through working in her father's library as librarian and the collector of the town's stories but more importantly individuals' secrets. The impact of nazism grows and so does her refusal to be part of the silence and denial. Maybe the Moon, by Armistead Maupin. Cadence Roth is an actress determined to be famous in America. The story is based apparently on the dwarf actress who played ET.
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