Front cover - image One very blue eye peers out between fingers The title is 'starecase' - it is written in bright pink and yellow. A series of communication symbols - universal disability sign, neurological/cognitive, hearing and vision sit below the title. Text - for and by people with disability Hate Crime - and what you can do about it We're still here - Tabi and Naomi's story Meet Mr Tom Softly Suresh Rajan speaks out about disability discrimination and Disability Care Australia Plus Election 2013 Your no holds barred windup of disability policy for the 2013 election Going Commando What Happened? Bolshy Divas The Business of Disability Produced at Spasmodic intervals within a miniscule budget Page 1 THIS MONTH 04 Election 2013 Your roundup on the 2013 election 07 What happened to you? PWDA President Craig Wallace spills the beans 8 The Patient Diary Stories from the inside 9 In My Garage An Introspective 10 Meet Tom Softly Son, Brother, Uncle and motorcycle champion 12 Hate Crime And what to do about it 9 Suresh Speaks Out On Disability Care Australia 10 Going Commando With Mel Noonan 18 Bolshy Divas Never mind the bollocks 20 The Business of Disability Where to from here? 8 We’re Still Here A Conversation Page 2 From the Green Chair Welcome to the first edition of ‘stare case’. In Australia, we don’t have anything like a ‘community newspaper’ written for and by people with disability. So with little forethought and much enthusiasm, we set out to remedy that. Our biggest issue was the name. Being a thoughtful type of person, I contacted the most politically correct person I know and asked her what she thought about the name ‘Gimp’ for a disability publication. Her response was, shall we say, ‘as expected’. That started a mass consultation - not in the manner of government, there were no focus groups, no church halls and no Survey Monkey surveys - to find out exactly what this publication would be called. The bolshier of our disability advocates had the most inappropriate names. Incurable was popular, as was Defective. Most of us had the good taste to spurn the name ‘Useless Eaters’. Mutant News and X People was popular - we suspect Hugh Jackman had a hand in that. The Twist, Cutting Edge, The Cabbage and The Short Straw. Our eternal gratitude goes to blogger, advocate and all round fantastic guy Dave Hingsburger for coming up with starecase. It speaks nicely about the barriers we all experience, including attitudinal barriers. I should mention one other thing. I told you we consulted with disability advocates across Australia, but we did not speak with one person with an intellectual disability. I hope we can change that. - Pretzel Image: Screenshot of the front cover Editors In Chief A bunch of people with disability Associate Editors A bunch of people with disability Contributing Writer Situation Vacant Contributing Writer Situation Vacant Art Director Situation Vacant Cartoonist The fabulous Dave Lupton Circulation Officer Situation Vacant Sales Officer Situation Vacant To apply for any of the above positions, write to starecasenews@gmail.com election 2013 the state case decides and so finally, it is almost over. Image: An australian flag in front of a polling booth. a hand is putting a slip of paper into a ballot box By Aeropagus - your anonymous tipster on the tricks, traps and politics of election 2013. fter three years of high drama and hysteria we are knocking on the door of the electionwe had to have and can never seem to leave. Kevin Rudd has somehow managed to prove that he is still as strange, moody and erraticas we all thought he was and Tony Abbott has ended the election saying things-in-the-same-robotic-tone framed by his daughters like a latter day Robert Palmer video. Rupert Murdoch has merrily unwrapped his mail order edition of Photoshop and seized control of the front page of The Sydney Daily Telegraph while the ABCs Q&A strides into the new convergent multiverse and proves that the days of yellow newsprint are nearlydone anyway. Meanwhile, nourished in fertile soil moistened with the spittle of a cranky political debate, small political parties have mushroomed promising a Senate ballot paper to rival the ginormous ACT one of 1989. If you want to marry it, shoot it, fish it, legalise it, deport it or root it, then Election 2013 has a party for you. So what does it all mean for us? In the world of disability, the election has provided a neat snapshot of all thats gone wrong or right over the last few years. Everyone says the NDIS is important. Tick. Puzzled one-issue parties wonder what to say about us without offending our little panties, while both major parties ruffle hair and throw in the odd patronising comment or worse. The Every Australian Counts campaign, always a hub of frontier campaigning innovation -who can forget their rediscovery of tea - has centred their campaign around a BBQ. And somered caps. Yet somehow it seems to scrape through. Onya John. Speaking of BBQs, at least none of the candidates are setting fire to us, unlike the St Kilda football club who somehow decided it would be a good idea to book a dwarf entertainer and then let a group of pissed footballers set fire to him. Amidst the flames, various well oiled official disability ‘peaks’ have taken a steady as she goes approach.This consists of declining to lower themselves into the hurly burly of the campaign and making all the impact of dropping a tissue on someone from a two storey building. Instead a motley collection of comedians, unfunded peaks and social media activists have done all the heavy lifting without a cent to their name. Situation normal, basically. It’s time we had a no holes barred look at what the variousparties actually have to say. So off we go. Election 2013 - the view from Aeropagus’ window. Liberal Party of Australia The good Seems to be genuine commitment to the NDIS even if Joe Hockey’s eyes seem to water every time he talks about the cost of it. They may not like it, but in their heart of hearts they know the backflip backlash would be huge. Changing back to the NDIS instead of DisabilityCare - its the capital “C” that makes it really shit - seems a good symbolic move, although we can only pray that this will not mean yet another crazed branding exercise around the colour of the office rather than telling us how the scheme works. Combining employment and disability policy within one Ministerial portfolio is probably worth trying given the abysmal cooperation between agencies evident in the Governments great white National Mental Health and Disability Employment Strategy. Industry council could be a good initiative but needs fleshing out. The bad Talks about cutting red tape and reporting requirements hampering Australian Disability Enterprises (code for sheltered workshops) seems suspiciously like business as usual. This is the last thing we need following the Supreme Court decision on the Business Services Wage Assessment Tool which overturned the notorious competency based assessment framework which saw many workers with disabilities paid low wages based ontheir disability, rather than how hard they worked.Mention of carer bursaries (the only new spend in the policy) seems to hark back to the days of the Howard Government when disability was hardly mentioned at all under a sea of initiatives which insisted that all people with disabilities had carers. We need to watch them on the NDIS especially when the pressures come on around funding and there is a push back against Paid Parental Leave, especially from party dries. Australian Labor Party The good Labor has announced more sites for DisabilityCare during this campaign and has a genuine passion for the scheme. There is a belated acknowledgement of the role of advocacy. Labor passed the legislation for the scheme and the levy and has been unswerving in their advocacy for it, even if they wavered uncomfortably close to taking funding for the scheme to a federal election. Yet more election announcements of funding for accessible playgrounds will probably warm a few hearts even if maybe we should be brave enough to ask whether they are something that could be funded by private donors, leaving govt to fund the really icky stuff no one wants to touch, especially more support for people at the ageing disability interface.Programs like School Halls and the National Broadband Network actually have had a really positive impact for disability but they seem undersold. The same for housing. The bad While Labor clearly has a passion for the NDIS, Rudd Redux seems oddly detached fromit and to almost see it as Julia Gillard’s. The general impression given is like moving into a house and discovering your neighbour has left a rusty but serviceable wheelbarrow in the garage. It’s a happy surprise, but not really yours. Labor continues to announce things, like the pilot sites, by press release without talking to anyone, including the State and Territory Governments - tricky given this is a joint set of pilots involving complex transition arrangements. On employment, Labor seems to feel that there is nothing terribly wrong with what they are doing now and grimly persists with the line that uncapping employment services will somehow create more jobs. Old news. Time for something new. Changes on employment would require messing with powerful NGOs and entrenched arrangements between DEEWR and FaHCSIA as well as real work with employers and on community attitudes. If they have the appetite for that, it’s not showing. Labor at least mentions the National Disability Strategy even if they seem to have no idea how to actually implement it. The verdict Wise voters should look for what isn’t in the parties policies. There is little mention on either side of a coherent whole of government framework to meaningfully address the systemic barriers faced by people with a disability. Where parties do have a plan, such as the NDS, it all seems underdone, like a roast chicken at a cheap fundraiser. Oh and while the ALP talks of cuts, cuts, cuts both parties are facing the reality of deep efficiency dividends and/or cuts to the public sector. They have been reticent to detail whether these might fall into the Families, Housing, Community Services and Indigenous Affairs portfolio or the equivalent should the coalition be elected. We need good talent in the bureaucracy to implement reform lest the Scheme fall foul ofthe many hurdles that lie ahead - there will be much to keep us occupied over the next few years. Ever vigilance. - Aeropagus page 7 what happened to you? Image: Profile picture of Craig Wallace. Craig uses a wheelchair. What should you say when people ask you ‘that question? What happened to you? Anyone with an obvious disability will have been asked this question many times in their lives. Especially by children. Now we all know that lying is wrong. It gets you into trouble. Sometimes you get caught. People talk to each other and your fibs need to be consistent. You need a good memory to get away with it. And of course I know now it’s better and braver to be straight with people about your disability. Lies beget ignorance and prejudice. The truth really does set you free. But for a time – as a younger person (like a lot younger)– I got really, really sick of it. The answer involving being born with a rare, congenital condition was very boring, technical and they wouldn’t understand it anyway. It would just lead to more questions. No, what was needed were some showstopper answers which were useful at school, and later in pubs. Ones that would leave people staring in bewildered silence or create a line of further questions that made one look exotic and interesting. So as a youngster with a vivid imagination I started spouting the weirdest, most incredulous explanations I could to those who seemed gullible enough to take it in. Here are a few, starting with my favourite: 1. Assassination: “I took a bullet when President Reagan was shot and my family were given new names and relocated to Australia for our safety” –well, it was the eighties so the timing was right. I had started reading ‘Potboilers’ by Robert Ludlum and Irving Wallace. This seemed like something that might happen in one of those stories. 2. Train: “I was run over and cut in half by a Tangara train and the Doctors put me back together wrong. Mum is planning to sue” – this to a wide-eyed kid in the street. I chose the Tangara Train because it seemed new and fast – the kind of train that would run you over really efficiently. I also had a specialist that I didn’t like and this seemed a good way to smear the profession. I liked the idea of my parents running around suing people. 3. Radiation: “My parents were scientists working at the Lucas Heights Nuclear reactor and there was an accident” – this had the advantage of a) being exotic, b) making my parents like the Curies and, best of all, c) being a potential schoolyard weapon – if I touched somebody, maybe some of the radiation would come out. 4. More radiation, but from France: “My family were French colonists, we lived on an Island near the nuclear tests” – This one was spurred by an episode of ABC’s Behind the News following the Rainbow Warrior bombing and during a perverse stage where I liked the idea of being French and a colonial overlord. This one had all the advantages of number three as well as showing off a knowledge of current affairs. (And yes, of course I shudderat the utter insensitivity of this one now). 5. Lightning: “I was struck by lightning in a field while flying a kite for an experiment” – this one was very influenced by seeing a picture of Benjamin Franklin in a yellowing children’s encyclopedia. Just what the lightening did was never made clear. 6. Bionics: “I was in a car crash and now I’m waiting for my bionic legs to arrive from America” – no prizes for guessing which 70’s TV shows influenced this one. I shudder at the utter insensitivity of some of these now but this tangled web was a response to being asked the same questions day after day.And I’m sure I’m not the only person who has an armory of interesting – and less than literal - responses to the question: ‘’What happened to you?’’ Maybe some of them actually did happen to you. Share them with us. Craig Wallace used to be the President of People with Disability Australia but they read this article and sacked him. This may not be true. page 8 the patient diary Our disability version of a travel correspondent, with all the inside news from a major public rehabilitation hospital #Powder mash potatoes with dinner again #Yes said the nurse, you are probably the only one with a plan for how you can leave hospital. The Drs don’t know. #hospital catering drop trays off, pick trays up, not in job to check if person needs help to eat or has eaten #Turning on the hospital spit. Nurse says they love indwelling catheters cause its less work for them #Stuck on the hospital spit because there’s no care in community? False economy #4 people drag a person out of bed to get them to walk. He’s ready for discharge. #Non verbal, sick and confused so nurse marks it down as refuses medication #Non verbal female patient in distress when male nurse on night shift invades privacy #Cockroachs running over bed after double bleach clean for infection control gluten intolerant, offered sandwiches for third meal running, nurses records only “refuses to eat” #Hose down in the mass showers. Can almost smell gas, no that’s the next loo #Trust me I’m a nurse she said before stuffing up the procedure You can keep up with the hospital adventure at #thepatientdiary on Twitter. page 9 in my garage Image: A garage door The question is - how do we change this for people with disability and their family members? I am sitting in my garage. It’s not that unusual to sit in a garage, I grant you that. But I have been sitting here for five hours because I have an exam tomorrow. I had an exam a month ago where I did not sit in the garage at all, so it is not something intrinsic to exams. My garage sitting has more to do with the fact that my daughter and I have to share every waking moment, and quite often our sleeping ones too. She is not a newborn, not even a child. She is legally allowed to vote, to drink, to drive a car. And yet we are forced to spend every waking, and many sleeping hours, with me because of the impact of her disability. I am mentally incapable of preparing for an exam in that state. The state of ever presence. The state of ever watching. She goes to her room and stares at an electronic device, headphones in. It works for her. Probably about as much as going to the garage works for me. But I know that when she wasn’t here I didn’t need the garage. When I wasn’t there never happened. The bad mistake party, the after school snogging, and so on. If there is one thing I miss it is the space to just be me. Not a carer. Not a mother. Not a support person. Me. At least I had it once. I hope this magazine can assist in the development of a space, maybe as physically real as me sitting in the garage, but nonetheless a mental space, where people can just be them. No explanations, or headphones required. page 10 meet mr tom softly Image: Tom Softly is riding a Trial bike. His mother watches from the background. Tom Softly is a champion in his chosen sport of Observed Trials and has become a role model for young men with Down Syndrome. It’s been over 12 years since 29 year old Tom Softly began riding a motorcycle, but his passion for bikes began many years earlier. Tom’s Mum, Jackie, recalls his first tricycle, bought when he was three years old. “It was a very wide based plastic tricycle with tractor style wheels. Tom hadn’t been walking long when he started riding this, so it was great that it was so stable, compared with most trikes”. Tom progressed through a range of bikes as he grew, and finally dispensed with his trainer wheels when he was 13. Tom’s father, a keen motorcyclist, suggested Tom would be able to ride a motorbike too. Jackie recalls her reaction being along the lines of ‘over my dead body’ but it wasn’t too long before Tom had bought a small motorcycle. Within days he was riding and had obtained his competition license. Martin, Tom’s dad, modified this bikes throttle, and it didn’t have gears. Over time, Tom learned to use gears, and his current bike is a full sized one. Tom and Martin compete in Observed Trials, which involves standing on the foot-pegs to balance and move around a ‘section’ of ground including high rocks, gullies, logs and other obstacles. Points are deducted when riders put a foot on the ground or fall off. It’s a sport that takes a lot of skill, patience and balance and Tom has developed all of these. He often gets first place in his division, and has shelves of trophies and medals in. It has also given Tom and Martin a common passion. Tom has also become something of a role model for young boys with Down syndrome. Tom and Martin are valued club members, attending busy bees and social events as well as competitions, sometimes camping over several days. Tom doesn’t use a lot of speech but this hasn’t prevented other club members getting to know Tom, enjoying his company and developing respect for his character and determination. One young man commented ‘He stacks it, but he doesn’t complain like a lot of blokes do. He just gets up and back onto his bike again. I really respect him for that’. All of this is a far cry from the days and weeks after Tom’s birth, when he was diagnosed as having Down syndrome, and medical ‘experts’ predicted a life of ‘won’t be able to do this, that, much at all really’ and the best thing his parents could do was to “take him home and love him, and worry about all the other stuff in a year or so”’ Luckily, Martin and Jackie ignored everything they said (except the loving bit) and have encouraged Tom to dream and live way beyond those early predictions. “Sadly, Tom faces this ‘soft bigotry of low expectations’ every day,” Jackie says. “It’s insidious, and changes how he is treated, including in the workplace. He is capable of so much more than people think. One of the great things about the motorcycle club community is they now have ordinary expectations of him, just like any other rider. As it should be.” page 12 hate crime and what to do about it An image of two police officers A poster that reads 'Call 000 when a crime is happening, someone is in danger, someone is being violent' A green Easy English infographic saying 'Easy Reading' What is a disability hate crime? If someone commits a crime against a person with a disability because they do not like disabled people, that is a disability hate crime. This week, everyone is talking about Blake Johnston. Blake Johnston is an entertainer who was set on fire by football players at the St Kilda Football Club. Blake Johnston wasn’t hurt, and it was supposed to be a joke. But Blake didn’t think it was funny. Blake has a disability - he is a short statured person. Some people are asking if the same thing would have happened if the entertainer at the club didn’t have a disability. Some famous Australian entertainers with a disability are comedians Stella Young, Adam Hills and Tim Ferguson. We all have rights to: keep safe and feel safe use the Law speak up and for people to listen to us be treated well and with respect be who we are make our own choices keep our things safe It is wrong for anyone to hurt you or make you feel unsafe. It is wrong for anyone to take or harm your things. It is wrong for anyone to treat you badly for who you are. You should tell someone if anything makes you feel bad. What can you do if you think you have been a victim of hate crime? You have a right to Tell someone if anything makes you feel bad Report it if something is wrong Tell the police if anyone does something against the law You can read more here - http://www.police.nsw.gov.au/community_issues/victims_of_crime/easy_english page 14 An image of Suresh Rajan suresh speaks out will disability care australia be a silver bullet for all disability issues? Wikileaks Party Candidate Suresh Rajan talks about DisabilityCare Australia and discrimination he announcement that Western Australian Premier Colin Barnett had signed WA to the NDIS (Disability Care Australia) was greeted by champions of disability in this state with considerable cheers of satisfaction. But what does this all mean? Let me declare two positions that impact on my assessment of the DCA. Firstly, I am the President of the National Ethnic Disability alliance, the peak body of the various Ethnic Disability associations around Australia. Secondly, I am the CEO of the Epilepsy Association of WA and a Director of Epilepsy Australia. Given those positions I have had various discussions with the bureaucrats and political apparatchiks responsible for the rollout of the DCA. We have a lot to concern ourselves about in regard to the treatment of people with disabilities. Let’s just look at some of the issues that have arisen in recent times that cause me to raise some questions. Let us just list a few of these: 1. A young girl who is vision impaired is asked to surrender her white cane at a rock concert. This caused the girl more than simply the physical angst that was associated but also caused a great deal of mental anguish to her. 2. A young man who went to the cricket was asked to surrender his cutlery even though it was essential that he be able to cut his food into manageable bite size pieces. 3. A doctor in Horsham who has been a 457 visa holder for a number of years is denied permanent residency in Australia because his son has a disability and in the words of the Department of Immigration and Citizenship, will be a ”burden” on Australian society if he was allowed to stay. 4. Another doctor who had his visa application denied for ostensibly the same reason as above because of a diagnosis of cancer having been given to his wife. 5. The provision by one of the WA Ministers of a letter to a blind colleague in a PDF format which was not able to be read by her “blind” software despite her indicating this to the staff at the ministerial office. 6. A blind woman was refused service when she entered a cafe accompanied by her guide dog, and was told she would only be served if she sat outside. 7. A lawyer’s application for income protection insurance was refused when she disclosed she had once experienced depression. This refusal was despite the fact she had not taken any time off work because of her impairment in 10 years. 8. A real estate agent refused the rental application of an accountant who used a wheelchair, because the agent believed she would not be able to pay the rent and maintain the property because of her impairment. 9. The parents of a young boy complained their son had been discriminated against because shortly after being told he was autistic, his child care provider would no longer let him attend the crèche. 10. An employee of a travel agency refused to accept a booking made on behalf of a person with a disability. She did this without asking the nature or extent of the disability. The examples listed above from 6 to 10 are taken from the WA Equal Opportunity Commission’s website as the examples of impairment discrimination that have been brought to the attention of the Commission. In the most recent annual report of the Commission, discrimination on the grounds of impairment continues to be the most common closely followed by discrimination on the grounds of race. There is still considerable work to be done when it comes to discrimination. When you then overlay the misinformation and the prevailing attitudes of exclusion with a race or Non English Speaking Background (NESB), you are now presented with a person who may have two of the significant discrimination grounds listed above. There is a considerable amount of education that remains to be done. Recognising that people with disabilities also have abilities might be a good starting point. Of course, to bridge cultural factors that go to the issues of exclusion and ostracism is another skill set that very few in the upper echelons of government possess. This emphasises the very great need for intervention and education strategies that are culturally appropriate. Until our attitudes to people with disability change neither of the two systems (the West Australian one and the NDIS) is going to be particularly successful. We are very appreciative of the WA government having signed up to DCA. There was a need for consistency of treatment across the nation. The major concern that I have consistently expressed in regard to the DCA is that there are societal attitudes that require shifting. Societal attitudes towards people with disabilities still require fundamental paradigm shifts. So let us be clear on the issue of DCA. It has potential to be a vast improvement on the systems that we have had in a piecemeal and fragmented and often inconsistent approach in the past. However, let us not kid ourselves that it is the panacea to all the problems. In the area of episodic disabilities such as epilepsy, there is still need to examine the application of DCA. In the meantime, we congratulate the Premier and Prime Minister on signing WA up to the DCA. Now they need to listen to people who will be participants in the system. And, importantly - to consider those who are excluded. Going Commando Melissa Noonan holds a golf club. Her right leg is a bare prosthetic leg coloured blue and silver. o cover up or not to cover up, for some…that is the question? While some people living with a disability prefer to fly under the radar, and or not to draw attention to themselves, others think differently. For me, the ability to be able to successfully ambulate in the community overrides everything else. I am a doer, and I need to get around. As an amputee I am fortunate (while it should be a given) to have been fitted with a microprocessor knee. The knee I use, day in and day out is a C-Leg. This knee unit provides me with many advantages and has changed my life, and my ability to function as a human being. Some time back, not long after I learnt to walk again, it was suggested that I could have what is known as a cosmesis. A prosthetic cosmesis is a cover which fits over the prosthetic limb and replicates skin, making the limb to look real. When initially fitted with a cosmesis, I thought it was okay, but wondered how the fake looking toe nails would stand up to constant painting! Not 20 minutes after being fitted and standing at an ATM a little girl said to her mum that my leg looked like her dolly’s. Who was I kidding? My leg was missing and why was I trying to hide the fact? Not long after that, I had the cosmesis removed. I was never embarrassed by my prostheses, in fact it has always been very much a part of me, to the point where I feel separation anxiety when it’s taken away by my prosthetist for modifications and tweaks. These days, prosthetic cosmeses almost look real, if you can afford them. In fact, many people would struggle to identify between the real leg and the fake one. Hair can be implanted and skin colour can be matched within one sixteenth of your own colour. However, it’s something that has never enticed me. Not because its costly, or the fact I had a reality check – but simply because, my prosthesis is just part of who I am. Most importantly, function overrules everything. As an above knee amputee with a pretty dodgy good leg, my prosthetic side is sound. It is stable and functions in ways I could never have imagined. A few years back a journalist from Newcastle attempted to cause controversy by suggesting that amputees (going commando) in public places, such as airports and shopping centres should cover up, and highlighted the point that he didn’t want to be subjected to the offensive behaviour of individuals displaying ‘their parts’ for the world to see. He couldn’t understand ‘people felt need’ to let everyone know we were missing bits? If only he knew. For the most part, it’s not a public display of attention. In fact, for many it’s the reverse, to avoid attention and the questions relating to airport security, it’s about function and for the most part, it’s about being comfortable living in our own skins and having the ability to make our own decisions. I have never chosen to wear or expose my prostheses as a badge of honour. It’s simply just me. I’m not embarrassed – it’s the person I am. I don’t feel the need to compromise my function, nor do I choose to cover up. If it’s hot, I wear shorts, just like the next person. I love my own skin, even if a part of it is metal. So going ‘commando’ feels very normal, if not natural – in fact, it’s a huge part of me as a person, as an individual, as an amputee. You can contact Limbs 4 Life at (freecall) 1300 782 231 e: info@limbs4life.org.au w: www.limbs4life.org.au Image 2 An adolescent and a toddler are walking in tandem. The toddler, a girl, is wearing pink and has a pink prosthetic right leg. The adolescent, a boy, has a blue prosthetic right leg. Page 18 A Sex Pistols cover in yellow and pink has been altered to read 'Never mind the Bollocks, here's the Bolshy Divas' There is a lipstick kiss in the bottom corner. A new type of Activism Shiva Bolyson talks about disability, activism and being a bolshy diva e’re taught to comply,” says Shiva Bolyson, one of the Bolshy Diva group of disability activists. “But here’s a news flash - compliance is not a life skill.’ Bolyson is one of the new wave of disability advocates, activists who walk a dedicated balance between guerilla activism and advocacy. In a few short years, the Diva group of women have changed the disability activism landscape to something a little more bolshy. ‘We’re disability activists in the style of feminist masked avengers, ‘ reads the description from the Bolshy Diva website. ‘(We) expose and discuss discrimination, unmet need and issues which affect people with disability and their families.’ Shiva believes the power of the group lies in its organic nature and wide membership. “When the group started, we decided not to have a formal membership, just a concept,” she said. “We wanted to use humour, art and passion to talk about the overlooked, the unfair and the subtext behind real issues which affect Australians with disability. But we couldn’t do that within the positions that we held within organisations, within government, in our day to day lives as people with disability and family members - and so the Bolshy Divas were created.” After a year of successful campaigns, the Divas expanded their scope, building alliances with women nationally. Their ranks include ordinary families and women with disabilities working to make change. One burning question - are there male Divas, or is this group exclusively a group of women? Shiva says that although the group is a women’s group, there are ‘honorary male members’. “We call them DwD’s,” she said with a grin. “You can probably guess why.” Tips for being Bolshy 1 Tell your stories. Shiva says that people with disability don’t always have personal power, but they are the experts in their own lives. Your story has more power than you do - it helps you make a personal, human connection. 2 Keep it real. When it comes to advocacy, honesty is the best policy. It may not win you friends, but speaking your truth is part of being bolshy. If you buy into power games or political agendas, you’re going to compromise your integrity somewhere along the line. 3 Make connections. Part of the problem for the disability rights movement has always been resourcing and isolation - geographic isolation or isolation caused by disability or poverty. The advent and accessibility of social networking has created a new way for people with disability to connect and mobilise. 4 Keep a sense of humour. Its easy to get discouraged and traumatised by breaches of human rights, and its not an easy place to swim. The Divas use a combination of humour, art and passion to get across their message, and extend that combination within their networks. 5 Maintain your principles. The Divas use the Principles of Inclusion as their ‘Manifesto’, written with lipstick on a wall. ‘Its easy to get distracted by complexities, but inclusion is black and white,’ says Shiva. The values of inclusion Everyone is born in All means all Everyone needs to be in Everyone needs to be with Everyone is ready Everyone needs support – some more than others Everyone can communicate Everyone can learn Everyone can contribute Together we are better Crippen cartoon image - a boy in a wheelchair is with Santa, who is counting down on his fingers in front of a bag of toys. The boy is smiling. Santa is saying 'Let's see if I've got this right - you want a decent education, then a chance to work, and to be able to use a fully integrated, accessible transport system? page 20 The business of disability Image - Australian dollars As disabilitycare australia ramps up, so does the business of competing for our dollars A sternly worded letter from National Disability Services CEO, Ken Baker, started a national conversation about the ‘business of disability’. The letter was directed to NDS stakeholders, warning them that their intellectual property was at risk and that commercial operators had begun cashing in on the brave new world of Disability Care Australia. And begun it has. Criterion Conferences, a private enterprise conference organiser, is charging up to $5000 per head to attendees who want to learn more about the government scheme. Social media site NDIS Grassroots Discussion has sent a protest letter to charities around the country urging a boycott of the conferences. “We ask you to take a stand against this attempt to freeload on the disability reform process and urge you not to attend,” it says. “Let the organisers know you will not be there and why. . . what initiatives could you carry out that families or individuals have been waiting for? Think about the difference this money could make to the lives of the people your organisation supports.” Several keynote speakers pulled out of the conference in the wake of the subsequent outcry. In a new climate of increased choice and control, people with disability are starting to wise up to the fact that our dollars count. But will we also need to become smarter consumers? Without a doubt. People are starting to notice an anxiety amongst service providers who are ‘repositioning themselves’ as providers of choice. The branding has increased three fold, and there has been a massive increase in the number of ABN registrations in the name ‘DisabilityCare Australia’. Searching DisabilityCare Australia finds the official Federal government site, but it also picks up a bunch of advertisements, providers who have paid for keywords and who include ‘official’ material in their marketing. There’s a lot going on. And the rumours are flying thick and fast - people in Geelong being asked to sign contracts by some agencies before they set foot into the doors of DisabilityCare Australia. Self directed clients who get their money paid a quarter in advance to their host provider, which is then channeled into a high yield bank account (with the interest skimmed off the top without telling them). Big providers trawling their states to ‘absorb’ smaller providers with offers and tales of terror in order to coerce them to join their service. No doubt about it - what’s good for us can also be bad for us. With increased choice and control comes increased responsibility for people with disability as consumers. We must carefully weigh up our options before making decisions in the same way we would do when choosing a building or buying a car, instead of operating on trust. Your provider can use all the right words, but do they walk the talk? What do their other customers say? Exciting times, no doubt. But we must also remember the old adage ‘caveat emptor’. And look out for each other. Page 22 We're still here Images - Naomi and Tabi sit in their lounge room (photo, the Age). Tabi is seated in front of a black wheelchair. Image 2 - Student notes and a green stuffed lizard Tabi and Naomi are veterans of the disability system, but they are still here Tabi and Naomi are daughter and mother. Tabi is 19. Tabi was going to high school and TAFE. She wanted to get into media studies at university. Apart from a couple of pesky surgeries to put her spine back together, she was on track to do that. Tabi: Instead of spending my 18th birthday at my own party I spent it crying in hospital. I got a stuffed animal from my surgeon. He bought it in the gift shop. He looked sheepish. The registrar did the same. Naomi: In 2012 we had about 60 medical appointments. Could be more. She finished VCE, just. If she had a better spell we had to take it and run with it, so 3am study was not unusual. Our walls were covered with memory aides. When we ran out of paper, we used the drawings left behind by our friend Khaled. Tabi: It’s kind of hard sitting exams when you feel like you are drunk all the time, and break out into cold sweats for no reason. I don’t really remember a great deal about 2012. Apart from that it sucked quite a lot. On one exam paper I spelt my name wrong four times. Naomi: Summer of 2012/13 Tabi spent as an inpatient in a rehabilitation facility. They didn’t get to the bottom of her symptoms. We thought they were working on recommending a new wheelchair. They didn’t. Tabi: This is my friend Lily. She is a green stuffed lizard. She makes me feel better when I am awake at night with pain. Which is lucky, because the only place I go these days is to the doctors, so I don’t see too many other people. My grandmother was sewing Lily back together, but now she is measuring her up for pants, because it is hard to find enough fabric to sew. Naomi: Turns out the drunkenness was due to a medication they had been giving her. While we have been spending day and night together doing a whole lot of not much, they have finally figured out that she needs a new wheelchair. We don’t have a recommendation. Tabi: When I was little a had an imaginary dog called Favour. I started telling stories about Favour before my cancer was diagnosed. She kept me company in hospitals before I had ever been to one. She was blue and green and yellow and ate tumour. Lily hasn’t figured out how to eat tumour yet, but we’re still working on it. Naomi: Okay, so we have missed weddings, birthdays, anniversaries, graduations, the ability to earn a living, a social life. You get the picture. But we are still here. Tabi: Yes, yes we are. I am going to bed now before I tell you my real opinions on all of this. It’s not PG rated. Coming, Lily? Image - filler image - breaking the silence about violence and abuse against people with disability www.disabilityclothesline.weebly.com Back page (all black) think this is awesome? want to see more editions? We don’t exist yet. We’re people with disability who want to have a voice. But if you’re not a sheltered workshop, if you don’t run an institution, if you believe in inclusion and if you think we’re worth supporting, let’s talk. You can also buy this back page for whatever sum you think is reasonable. Email us at staircasenews@gmail.com