Opinion | 9 August 2016

Calling Out Ableism in the Media: Stop Being So Offensive To Disabled People

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George silenced

This weekend’s Good Weekend featured the story “Parenting an intellectually disabled child: life forever on duty” about Alex Browne a 22-year-old man with an intellectual disability. It showed that not much has changed when it comes to improving media representation of people with disabilities in this country. But listen up journos, it’s not okay to degrade people with disabilities and represent us as burdens, just because you think it makes a good story.

In this feature, we are told that being a parent of Alex is like “having a toddler, but forever” and that “she is bound for life to her son and his disorder”. I don’t dispute these facts and I acknowledge the hardship of parents who are too often under supported in their role, I take issue with the reporter’s representation.

The eternal child narrative permeates the entire story, and just in case you didn’t get it, the author makes half a dozen references to these including tantrums in the car, toilet training fails and constantly carrying colouring pencils. Holes in the walls created by Alex are described to shock the reader and while they build sympathy towards the parent and fear towards Alex. No effort is made to balance the story from Alex’s perspective. While it is difficult to extract this, we can draw on the experiences of other people with severe autism who, with the right supports in place, have been able to communicate. For example this from Temple Grandin, reflecting on her experiences as a child:

“My mother and teachers wondered why I screamed. Screaming was the only way I could communicate. Often I would logically think to myself, ‘I am going to scream now because I want to tell somebody I don’t want to do something”.

It would have been helpful if the author pointed out that people who do not have verbal communication punch walls because they are not provided with alternative ways to communicate or the necessary behaviour supports to deal with frustration. However that may have required the author to mention that major social reform that is currently taking place, you know, the National Disability Insurance Scheme (NDIS)?

There is no mention of the NDIS in the entire story despite the fact that Alex’s support needs are a perfect example of why disability advocates, including parents, campaigned hard for such a scheme and why the scheme has managed to secure bipartisan support and is now being rolled out across the country. Reference to the NDIS would have moved the focus from Alex as the problem to an examination of the social factors, something that the author was clearly trying to avoid.

The authors disdain towards Alex is exemplified in her deliberately unflattering and detailed description of his physical appearance. She points out his “oversized head”, and if that isn’t enough of an insult let’s mention that when he was born “he looked a bit like Yoda”.

Sorry but that’s not okay, it’s offensive and disrespectful. Personally, I know that my teeth make me look like Peter Rabbit but it’s a characteristic resulting from my physical impairment and pointing it out in that way is pure mockery and improper journalism that people with disabilities should not have to contend with. The author’s reference to Yoda is in the same vein as Eddie McGuire’s atrocious reference to the ape. This may be hard to see because we are far more in tune to racism than we are to ableism (social prejudice towards people with disabilities). After all, most people have never heard the word ableism and my voice activated software didn’t know how to spell it.

Forgive me if I’m sensitive to media representation and how the lives of people with disabilities are being devalued right now. I’m still coming to terms with the recent stabbing spree in Japan where 19 disabled people were killed and 26 were injured. The killer told police: “It is better that disabled people disappear.” The story barely got a mention in the Australian press and there was no outrage in the media towards the hate crime that it was. I am also more than just a little discouraged by the social media pile on last week against the member of the Q and A audience who dared to question Peter Singer’s views on killing infants with disability because they have “zero quality of life”.

People’s judgements about the quality of our lives impact on social policy and the Singer debate is a perfect example of how this impacts on the most basic of human rights, including the right to life. Those same judgements about the quality of our lives are influenced by the media, it’s all interrelated.

The media has a powerful influence on how Australian’s understand disability and journalists have a responsibility to represent us in a more respectful and positive light than what is current practice. It doesn’t mean that we can’t talk about the hard stuff. We need stories about the many difficulties and barriers that people with disabilities and our families face if we want to see social change. However, the dignity and voice of the person with disability needs to move from the margins to the centre of the story. The spotlight should be on the barriers that are placed before us and not on the size of our heads.

Join the conversation

  • Deborah Byrne

    This is a good article – shame about the title though which labels people as disabled (as opposed to people living with disability). The title somewhat negates the points made in the article.

    • Rachel

      Just so you are aware many of us use ‘identity -first language’ of disabled and whenever we refer to disability we refer to the ‘Social Model of Disability’ there is a lot to be learned by average Australians about diversity and identity when it comes to disability. Google search ‘identity- first language’ ?

    • AQ

      I’m sorry, but I am DISABLED. I am not a “person living with disability”. Do not erase my identity, please.

  • Bella

    George you say ‘No effort is made to balance the story from Alex’s perspective. While it is difficult to extract this, we can draw on the experiences of other people with severe autism who, with the right supports in place, have been able to communicate’.

    You talk of ‘ableism’ but all I can say is; How ableist of you to assume that the man in the article, Alex, has the same communication ability as another person ‘with severe autism’ who obviously by your quote, has the ability to articulate like someone whose cognitive ability is quite excellent.

    You obviously are able to self represent, you are compensated with aids – a wheelchair and possibly assistive technology. There is no ‘assistive technology’ for severe intellectual disability that can compensate for lack of ability to guide your own life, to make complex choices and be an agent for yourself.

    When are you people with physical disabilities going to understand that severe intellectual disability is something you cannot comprehend as as you have not walked in those shoes and really have no idea.

    • Bella

      BTW Alex does not have autism he has severe intellectual disability the causation of SOTO syndrome https://ghr.nlm.nih.gov/condition/sotos-syndrome

      • Vanessa Browne

        In fact Alex has Sotos syndrome and severe intellectual disability and he does not have autism or use a wheelchair. The diagnosis of Sotos syndrome does not necessarily require the existence of intellectual disability.

        Some people have Soto syndrome and intellectual disability and autism.

        Some people have intellectual disability and do not have Soto syndrome.

        Some people have intellectual disability and do not have autism.

        Some people have autism and do not have intellectual disability or Soto syndrome.

        Some people have intellectual disability and use wheelchairs.

        Some people have intellectual disability and do not use wheelchairs.

        Some people have autism and use wheelchairs.

        Some people have autism and do not use wheelchairs.
        Thank God for diversity so we are all not exactly like George!

        • Nick Fryer

          How dare you talk down to George like that!! That is ableism at it’s finest! Every time people like us have something to say about this topic, there is always someone pointing out how stupid we are. ALWAYS!

          • Vanessa Browne

            Nick, I did not “talk down” to anyone.
            Are you suggesting that I “talk down to George” and “that is ableism” just because I can stand up?
            Or are you saying it is “ableism” to simply “talk” because some people can’t talk?
            Either way I can assure you that I didn’t “talk” to George and when I typed all comments here I was sitting down.
            Even if George and I were in the room and we talked, our talking equipment would be at similar levels from the ground.
            I did not point out how stupid you are.

          • Cathie Davies

            Wow.

        • Les Cope

          Vanessa, That’s not an appropriate comment to make about George or anyone for that matter. Can I suggest you read his article again carefully. He is taking issue with the reporters representation of Alex. he is not disputing the battle and situation you and Alex find yourselves in.

  • Sue Oreilly

    The fact that the $22 billion NDIS was embraced and supported by so many Australians and was passed unanimously by all MPs in both houses of federal parliament – as you yourself point out here George- tends to undermine your overall argument I’m afraid.
    As with people who have disabilities, it is actually impossible to sum up “media representation” of people with disabilities in one huge sweeping over-generalisation. There are numerous instances of media accounts telling stories from the point of view of people with disabilities themselves, celebrating their many achievements, often against considerable odds, and presenting individuals with a range of disabilities, both physical and intellectual, in a very positive and supportive light, entirely from their own point of view.
    It is therefore incorrect to criticise one story of which you personally (and I have to say entirely predictably) disapprove, on the grounds that “this is how the media presents us all the time, and it’s awful”.
    People with physical disabilities who are extremely bright, articulate and academically gifted, such as yourself, and many parents of children significantly less disabled than Alex, the young man in this particular story, inevitably take great offence whenever the parent of a profoundly intellectually disabled person tells their own, personal story in the media (and it always has to be the parent telling the story, because their son or daughter’s profound degree of intellectual disability means they literally cannot.) The reason such great offence is taken, far as I can work out,appears to be that people such as yourself, and some other parents, seem to assume that if one person’s profound disability is shown or described in (truthful and accurate) detail, then somehow it will “tarnish” every other person with a disability and cause society to reject or discriminate against them.
    What puzzles me about this response is that, in all my experience, the vast majority of people react to individuals as individuals – that is, people with disabilities are treated just like people without disabilities; responded to as individuals, with their own unique personalities, interests, skills and human flaws. And I would have thought that people with disabilities would far prefer to be treated as individuals, and think of themselves, and be thought of as such, rather than choosing to think of themselves as one vast undifferentiated amorphous blob? It’s not as though the journalist in any way tried to suggest that Alex was representative of some four million other Australians with disabilities.
    In other words, the only person actually entitled to take offence, or not, from this portrayal of Alex is – Alex himself. Surely? Although as I heard someone observe somewhere else recently, the world these days seems to be full of people falling over themselves to take offence on someone else’s behalf…except in this instance, you are offended on your own behalf at the representation of someone else…
    And finally, because I’ve already gone on far too long – might I dare suggest that it is actually stories such as this – the personal story of Alex and his mum – that actually help explain why so many Australians so enthusiastically embraced the NDIS and were willing to pay a higher Medicare levy to help fund it? Positive stories and representations of people with disability are essential, but so too, sometimes, are truthful accounts – however confronting – of what severe and profound intellectual disability actually looks like.

  • Kudos, George. The original article in ‘Good Weekend’ was an appalling example of ableist “journalism”.

  • Rosemary Crossley

    AARGH – I’m in Toronto at the biennial conference of the International Society for Augmentative and Alternative Communication, which of course features the many communication options for people like Alex. It is tragic that Alex does not appear to have access to any of these options. If Alex has no means of communication apart from tantrums, this raises a question about his intelligence, or rather, about those who claim to have assessed it.

    We have no way of assessing intelligence other than through what someone can express.

    Recently I have been involved in a project re-assessing people with little or no speech previously described as having IQs less than 50, based on tests requiring speech. Some have toiletting accidents, due to underlying neuro-motor impairments, and some carry unusual items, such as coat-hangers. Of the 30 re-assessed to date, using tests that don’t require speech, not one has scored below the average range.

    And if we’re going to judge people on the basis of appearance, I wouldn’t do so well.

    Decades ago Sixty Minutes broadcast a listener’s comment saying that Anne McDonald, who’d been said to have an IQ less than 20, should be killed. That was before she graduated university. Probably the media wouldn’t publish such a comment today, but for Good Weekend to degrade Alex, presumably on the comfortable assumption that he wouldn’t understand, comes close.

    Rosemary Crossley AM

    • Sue Oreilly

      When you return from Toronto, Rosemary, would you be interested in meeting Alex, or someone else with SOTO syndrome assessed as having a profound intellectual disability, and introducing them to the latest AAC options, and seeing how it goes?
      Having read Annie’s Coming Out, the wonderful book you co-authored with Anne McDonald, I appreciate she was said 50 or so years ago to have an IQ of less than 20, but obviously that assessment was rubbish. Although severely physically disabled, not least because of the way she was treated before being freed from St Nicholas’s by you, Anne was obviously extremely bright and did not have an intellectual disability. Many people who do have such a disability are clearly able to communicate via AAC options. But are you suggesting that AAC works for everyone,even those with clearly and undeniably the most profound and severe intellectual disability? Because if you are, that would be an interesting proposition.

      • Les Cope

        Hi Sue. Based on our families journey with a severe intellectual disability diagnosis, and what may or may not be possible I would say yes. Anyone, no matter their diagnosis has the capacity to communicate and make known their wishes etc. This is however a complex issue. It does not hinge just on finding one or more AAC solutions. What we have learned is that attitudes and values are paramount when working through this. When our son was supported 30 years or so ago by Rosie to communicate, this was only the beginning of his life opening up for the better. As parents, whilst we believed in him it took him another three to four weeks before he would trust us and open up to communicate with us.
        This is part of the complexity I referred to earlier. When studying special education I earnestly read all of the literature on intellectual disability. This I thought would equip me to better support my son. He was not there. No references, nothing that even remotely represented him. I moved on and studied other areas of disability during the course. He did not appear in them either. I then started the unit on social and emotional disability. There he was. On every page. For individuals who consistently fail it’s far more empowering for them to continue to fail. Especially if the person or persons supporting and closest to them expect failure. To fail becomes success in their eyes due to their emotional state and especially if they have poor cognitive skills. During the three weeks after he had successfully demonstrated understanding and language with Rosie we had to rebuild our belief in him. He had to believe in us and we in him. Small steps for us all with huge benefits for him.
        His journey reflects some of the points made by George. The impact on him socially by society with limited expectations or worse still lack of expectations effected his emotional state and belief in himself. Whilst I have not met Alex it’s possible that he also has a poor belief in his abilities, and even more so now with his ‘inabilities’ being reinforced by the article.

        From our journey it’s clear to me that intellectual disability, as its generally understood does not exist.

        Rosie is incredibly busy supporting families and individuals here in Australia and elsewhere. It’s far more productive if people contact her at the Annie McDonald Centre in Melbourne. They need to make the first move and more importantly, come in with an open mind leaving past baggage behind.
        http://www.annemcdonaldcentre.org.au

        • Cathie Davies

          Well said, Les. I’ve been trying to think about how to put those same sentiments into writing, but it is so hard – especially when some parents commenting on this blog appear to feel they are being criticised.

          I think all families have to find their own way forward, and the way is likely to be different in every case. But families are not helped by professionals who tell them that, no matter what they do, the destination will be the same. They are certainly not helped by uninformed stereotypes of disability, from whatever source.

          AAC has meant so much to my son and our family. We saw him grow from a terrified, seemingly aggressive young man to someone who is a well balanced, happy, enthusiastic, creative and opinionated member of his community. (Not to mention a loving and inspiring member of the family!) BUT that did not happen until his teachers and other professionals accepted his communication. If we had listened to the majority of professionals, I don’t think we would have found a system to meet his complex communication needs.

          Some comments to this blog imply that the availability of funding proves that individuals with disability are valued by society. Perhaps that is true – but ideas and the right people are needed as much as money. AAC has empowered my son – without it we would have been fully focused on controlling him, and that would have made all of us miserable. The comparative financial cost of strategies that empower compared to those that control is probably not that different, but the non-financial benefits of the first so greatly outweigh those of the second.

          Cognitive science tells us that language is innate and may be intact regardless of intelligence (which, in any case, cannot be measured if it cannot be communicated). Knowing how many people use behaviour to communicate – even in the absence of language – lets us know that there are some things our kids are highly motivated to tell us. Just finding a more positive substitute for “challenging behaviour” would surely be a good start!

          Families need to plot their own course, but they must not let their options be limited by “public” and “professional” stereotypes of what their children may be expected to achieve.

    • Bella

      This is so interesting because if none have scored below the average IQ range Rosemary, then they do not have an intellectual disability at all. So what was the actual prognosis if their disability was neither sensory, autism for example or neuro-motor impairments such as cerebral palsy prior to your assessment? Have you had similar results with stand alone assessment of moderate or severe/profound intellectual disability of unknown origin?

  • Sheridan Forster

    This Opinion piece is headed with an image of George with a sticker over his mouth saying “silenced”. Surely not allowing the Good Weekend’s story on Vanessa and Alex would be an example of silencing a story from the perspective of a mother of life with her son who can not verbally tell his story.
    For every person that I’ve seen call this article called an example of ableism, I’ve heard a number of parents and other care providers express gratitude for the article that they can relate to – the ever present caregiving imperatives and the love that they feel for their adult child.
    I fear that it is a greater “ableism” to only say that a story can be told if it measures up to what is seen as the general societies values (i.e., to live an independent life, have a job). I have worked and spent time with many people with severe and profound ID over my professional life. I feel that a far greater discrimination and denial comes when a person’s differences are denied or shunned. When no effort is made to understand the individual.
    Having colouring pencils and tantrums in the car are not inherently undignified – the reader often makes a decision on dignity based on their own lens. In fact describing Alex, what he carries, what he does, is perhaps the closest we can get to Alex’s perspective.
    To ignore difference and think that everyone experiences the world in the way that we do is an ultimate form of disrespect. To try to understand from another’s perspective, meet them on a common ground (which may be toy cars, pencils, social touch and sounds), is to really encounter the humanity with individuals with profound intellectual disabilities.
    Alex and Vanessa’s story is not everyone else’s story – it never claims to be. It should not be silenced.

    • AQ

      So we should not have any sympathy for the disabled person or try to see things from their perspective, and only care about/have empathy for their parent/carer?

      Bullshit. It’s nonsense like that which gets autistic kids murdered by their parents while the parents are martyred.

  • Donna McAleese

    Dear Ms Crossley, on behalf of our adult daughter, my husband and I would like to take you up on your offer to provide training in Augmentative and Alternative Communication (AAC) to our adult daughter (name with-held for her privacy) who uses no formal alternative communication methods as yet.

    Over her lifetime we (father, mother, daughter and 2 siblings) have engaged in training in Makaton, Compics, PECS, some modeling objects version and even purchased her a tablet and attempted to assist her with developing communication skills using that and an ACC program. Alas, not being formally trained Speech pathologists we seem to be missing some one of making the connection and being successful in this endeavor to date.

    It may be useful for you to know that the tablet was purchased after she had left the school environment as we were unable to afford the equipment before then and the ‘professionals’ at the time were reluctant to engage with, or attempt, the idea of tablets etc over ‘flashcards’ and signing. Never-the-less, we attempted the process in order to give her the best opportunity to have more control over her life so that she could make her wishes and needs known to others not conversant with her ways of communicating, as well as making our interpretation more accurate.

    Unfortunately, the federal NDIS (rather than the rebadged state model formerly known as “My Way” and now called “WA NDIS”) has yet to be fully rolled out in Western Australia, so you will need to find some way of funding the training and software (our ‘lifetime’ purchase disappeared when the company was taken over and folded) as our daughter is reliant on the Disability Support Pension and unlikely to be able to afford the costs from it.

    Our daughter has complex disability, including but not limited to intellectual disability and autism. It may be that this hinders the process but should you take up the offer to provide her with training you will be able to assess her willingness to engage in the process. We will be happy to assist with interpreting her body language until you are familiar with her current forms of making her wishes known.

    Of course, should she make her reluctance to engage in the process known, then we will respect her wishes and withdraw from the ACC process. In that case, she will be reliant on us and other family, friends and close associates to represent her wishes etc, in the same way as she currently does. It will also, according to the argument presented by Dr Talaporus’ article, demonstrate that not every person offered ACC is willing to use it and to force them to continue with that process is a breach of their human rights not to engage; rather than a question on whether they have the ability to actually learn, comprehend, retain and apply the knowledge in practical application.

    • Bella

      It can be both – unable to read, thus unable to spell and therefore unable to communicate by spelling or simply an unwillingness to do it if able. Compix, which for some who cannot engage with spelling is much easier, but still is dependent on the desire to engage with the process.

  • Maree Buckwalter

    Why have removed Vanessa’s comment?

    • Andrew Gibson

      Hi Maree,
      I can assure you we did’nt remove Vanessa’s comment.
      I do not know who or why it was taken down and it has now been
      re-posted.

      Kind regards
      Andrew Gibson
      Every Australian Counts.

      • Vanessa Browne

        Sorry friends – I just edited it and now its back, somewhere.
        But I just realised that I overlooked including some important combinations of Intellectual Disability and sensory disability! I do apologise.

        Some people have Intellectual Disability and blindness and autism.

        Some people have Intellectual Disability and blindness and not autism.

        Some people have Intellectual Disability and blindness and deafness.

        Some people have Intellectual Disability and blindness and deafness and another medical condition requiring surgery that could also result in Anosmia.

  • Vanessa Browne

    Maree, When I Googled the word “Ableism” the first result was “discrimination in favour of able-bodied people”. Maybe John is appalled about the story presenting Alex as being “able-bodied”.

    • Les Cope

      Hi Vanessa. This gives a clearer example of abelism..
      Ableism and disability discrimination) is the discrimination by individuals who are nondisabled, resulting in discrimination or social prejudice against people with disabilities. Ableism characterizes persons as defined by their disabilities, and as inferior to the non disabled. Discrimination faced by those who have or are perceived to have a mental disorder is sometimes called mentalism rather than ableism.

      In ableist societies, able-bodiedness is viewed as the norm; people with disabilities are viewed as deviating from that norm. A disability is seen as something to overcome or to fix, for example through medical treatments. The ableist worldview holds that disability is an error or a failing rather than a simple consequence of human diversity, akin to race, ethnicity, sexual orientation, or gender.

      Other definitions of ableism include those of Chouinard, who defines it as “ideas, practices, institutions, and social relations that presume able-bodiedness, and by so doing, construct persons with disabilities as marginalized and largely invisible ‘others;’ and Amundson and Taira, who define it as “a doctrine that falsely treats impairments as inherently and naturally horrible and blames the impairments themselves for the problems experienced by the people who have them.”

      This pretty well sums it up. Source: Wikipedia
      https://en.wikipedia.org/wiki/Ableism

      • Sue Oreilly

        So when you always write and speak about your son on his behalf Les, and we never ever get to hear his own views on this subject from Adam himself – is that an example of “ableism”?

        • Les Cope

          You are doing a lot of unnecessary fishing there Sue! Like Cathie I choose to protect him from some of the pointed negativity that’s coming up in some of these comments. If you had read my earlier comments about peoples emotional state and how damaging it is on occasions you might understand this. Whilst he has had many achievements these have not come easy for him. I shall ask him when hes up to it if he wishes to contribute. It will be his choice whether he decides to participate, not mine.

  • Erasmus’s tea lady

    George has a great gift for writing and has produced a very good article based on a confection. George has taken it upon himself to assume that which he cannot know about the young man Alex and his Mum; and we all know what happens when you assume.

    Ironically George’s article is accompanied by a photograph of a person with the word ‘silenced’ written across the tape on their mouth. George is not silenced, he is obviously highly intelligent and can obviously communicates very effectively.

    By contrast, Alex is silent because his intellectual disability renders him unable to speak, nor can he read or write or use social media and of course cannot protest an appropriated slight on behalf of someone else by writing the word ‘silenced’ on tape and putting it across his mouth.

    If Alex’s story cannot be told by the person who knows him best, his interpreter, his loving devoted Mum, perhaps George might like to propose how Alex’s story be told at all, given that Alex is already silent. Or are we to draw the inference from George’s article that because of the severity of Alex’s intellectual disability his gentle loving story is not worth the telling, lest it offend someone who is not intellectually disabled.

    Seeing as the notion of ableism has been put out there, what about the notion of intellectual ableism, which is: the discrimination by individuals who are not severely intellectually disabled, resulting in discrimination or social prejudice against people with intellectual disabilities. Intellectual ableism characterises persons as defined by their intellectual disabilities, and as inferior to those who are not intellectually disabled.

  • Rosemary Crossley

    Wow! What an interesting conversation. I’m not going to reply to anyone individually, because I’m working – as usual at the last minute – on 2 presentations for tomorrow. Of course we are happy to try and help anyone.

  • Cathie Davies

    Sue, my son has a great deal to say, publicly and in private. He has, gradually and with much support, become quite resilient. But we protect him from the kind of negativity that has been displayed in comments to this blog.

    He has had to work so hard to defy the limitations others try to put on him. Why would he waste his time arguing whether they are right, when his time is so much better spent simply proving they are not?

    He is eager to discuss such issues in forums where he thinks it may make a difference, but frankly, this isn’t one of those. If you are genuinely interested, numerous examples of communication by people with issues similar to my son’s may be found on the Internet.

  • Les Cope

    Hi Sue. I will ask my son if he wishes to contribute as you suggest. But for him it’s complex and can take a long time. He needs someone to support him to access the web and write his thoughts. On a good day he may write several paragraphs, but on a bad day, perhaps two words before crashing. Writing is only one of his delights when he’s up to it. Painting, engaging with his community and currently just getting through the day takes up much of what energy he has left. Add to that the fact that we see him only every second week when we drive to his house to support him as we wait for the NDIS to get there. Training his current workers to assist him to effectively communicate takes energy and time.

    My response was to your question about profound and severe disability and communication and it was my experience as a parent, teacher and educator that I focused on. It was fairly hard not to bring my son into the story with the journey we have travelled and are on at the moment. Yes with the right attitudes and support the sky is the limit. Most people can achieve more than is currently the case. And for the ones who don’t quite make it their lives will be richer and more fulfilling.
    I have seen people with the most profound disabilities faces light up when real engagement occurs. Whilst communication as we understand it to be is limited for some, it’s what we do for people that’s important, not too them.
    The journo could have made the article far more relevant and addressed the NDIS and how Alex might be supported to kick a few more goals than he is able to currently. My son has written numerous articles on his life and the value of being accepted and supported for who he is. Spoken at conferences and workshops on many occasions.

    • Sue Oreilly

      The point I was and still am actually trying to make Les – in response to those who criticise the original newspaper article and the journo who wrote it for allegedly choosing of their own volition to “silence” Alex and therefore, by extension, supposedly insulting and oppressing every societally put-upon person with a disability anywhere on the planet – is that amid all the outrage, the only reactions we never get to see expressed on sites such as this (and I just wish we could, because I’d love to know it) is the viewpoint of adults with severe and profound disabilities themselves. Can you, or Cathie, not see any irony AT ALL in the fact that one of George’s many extremely articulate and well-expressed articles has been published on a major social media site, under a picture – of all things – of himself with the word “silenced” taped across his mouth?
      By it’s very nature, the publication of George’s own article totally negates his primary complaint in the first place!
      And can you also not see the irony in parents seeking to strongly support George’s whinge re the original article and its alleged “silencing” of adults with severe intellectual disability, by themselves speaking on their own adult kids’s behalf?

  • Erasmus’s tea lady

    Yes Sarah you are absolutely right about the long-term aspect of communication development for people with intellectual and communication disability, funding is scarce as hen’s-teeth and often withdrawn right at the point where real progress is being made. That’s why for the sake of progressing issues too often overlooked for this cohort of people with disabilities, they rely on parents and close family members and friends to act as their representatives and interpreters to push the issues that the do not have the power or insight to push. I suppose, when all is said and down, it all goes back to the decision-makers makes the decision funding and therein is the rub.

  • Vanessa Browne

    Hi Arthur, have you seen the film attaching to the magazine article on the Good Weekend Facebook page? Hope the link works here: https://www.facebook.com/GoodWeekendMagazine/posts/1091177447619544?comment_id=1093838100686812&notif_t=share_reply&notif_id=1470974800170279

  • Samantha Connor

    Thank you, George, for writing this piece. It’s clear that you were critical of the journalist, not the family.

    I think the article missed the opportunity to talk about the NDIS, housing and the very real fears that parents hold about the futures for their children and family members.

    The only point to the story seemed to the message of ‘burden’ and the listing of perjoratives relating to Mr Browne, as well as relaying his mother’s distress and trauma (a narrative which shouldn’t be hidden but which should not be framed around Alex’s existence without a simultaneous discussion about good support and issues like access to housing).

    I would have liked to have heard more about Mr Browne. It’s clear he communicates well (behaviour is communication) and the references to him punching walls and crying before returning to the group home are clear indications that he is communicating his feelings about his living arrangements and daily life, as his mother notes. The journalist has been sloppy in not emphasising that – his mother points it out in the article, but the journalist chosen to focus on the behaviour itself. It’s not just wall punching, as Mrs Browne says.

    There are few articles about what his day to day life looks like, bar a reference to ‘lack of activities’ and no discourse about how the scheme we have collectively fought for might change things for Mr Browne so that his pain and frustration are not so prominently featured in his life.

    I hope the NDIS changes things for Mr Browne and his family and that this journalist’s follow up story depicts a family who are healing from their shared lifetime trauma under the inequities of a harsh and unforgiving system.

    My this week was spent in an institution, where fifty severely physically disabled disabled people have resided, some for decades. Their rooms are small, about the size of three hospital beds. They are provided with ‘nursing care’, which means they receive a few hours of nursing care a day. Many have pressure sores. Many are not ‘gotten up’ before twelve. Many are disconnected from their families. If many of these men could physically punch walls, I am sure they would. They came from all over the state, and with the few dollars left on their DSP after 90% was taken for their care, they have no money to leave the facility let alone go home for the weekend unless their parents own a wheelchair van and hoist and hospital bed and can care for them at home. Their issues and lives are not so different from Alex’s. Their rights have been almost completely removed.

    When I came home, I received the news that another disabled person in a group I belong to had taken her own life. This morning, I have heard of another friend who has decided that this life is too hard for them to bear. The person had good reason to die. It was not because of disability. I spend my life being thankful that activists like Dr George Taleporos are able to speak from the shared experiences of oppression that members of the disability community experience. I am glad that he, as a ‘severely disabled’ man who has had lifetime full time support needs, is able to articulate the marginalisation that so many disabled people face in Australia today. Thank you for your activism, George

    • Maree Buckwalter

      As a parent of a severely disabled son and a friend of Vanessa I find your comparison of Alex’s life to these poor people to be offensive Alex has a wonderful loving Mother who gives her all to give him the best life possible, given the circumstances he has many friends and as much social activity in the community as he will tolerate

      • Samantha Connor

        I am not being in the least bit critical of Mrs Browne’s parenting or
        making comment about what she has done to give her son a good life. I
        am sure she has fought tirelessly for her child. We all do.

        Those
        ‘poor people’ are just members of the disability community who, like Mr
        Browne, do not have enough support. This is quoted in the article –
        ‘The walls around him are dull green, and several of them have massive holes that he punched recently, out of frustration, his devoted mother
        says, at the lack of meaningful activities with which to fill his weekdays.’

        I
        am deriving from that comment that there is a lack of meaningful
        activities to fill Mr Browne’s weekdays. Or that there is not enough
        support to make that happen for him. Not sure why you would consider my
        comments offensive.

        I am simply pointing out that being marginalised because you are disabled is a commonality that both George and Mr Browne share.

    • Erasmus’s tea lady

      I have relatives who know the mother Vanessa and I have contacted her. She tells me the article in the Good Weekend Magazine was never going to be about the NDIS.

      It was always going to be about the dedication, love and persistent efforts of a mother for her son who happens to be severely intellectually disabled and can’t make the representations himself because of the nature and severity of his disability.

      Unfortunately, there was not the column inches to talk about the NDIS, perhaps there will be a followup on Alex when the NDIS is up and running, that would be fantastic – sort-of a before and after.

      However, in no way can Alex’s life be compared to or anything like the life of the people in the Dickensian institution which you describe. As portrayed clearly in the article Alex is not abandoned by his family, he is not forgotten in the shadowy corners of society and the point of the story was the unremitting effort needed to ensure that that does not happen when Alex’s mum shuffles off this mortal coil.

      It is the future that consumes Vanessa’s and Alex’s present. Only by the antiseptic of public scrutiny can the pervasive shortcomings of the system be exposed. Otherwise it is just the same ol’ same ol’ except in a different century.

  • Donna McAleese

    Dr Taleporos is obviously an intelligent, articulate man with a university level of education with physical disability/ies which can be assisted by aids. The fact that he can articulate himself and use his position in the disability sector to have the Every Australian Counts’ site publish his views, based on a flawed assumption, of the family and author is telling in itself. He has made no attempt to contact the people directly involved, neither Alex nor Vanessa his mother. If he was truly interested in Alex’s viewpoint, then as an academic with research skills it could have been easily achieved. Instead, he chose not to.

    It is, in my opinion, extremely unfortunate that the Every Australian Counts (EAC) chose to publish one viewpoint on disability to the detriment of other outlooks on disability. I would have thought that the EAC, being associated with the idea that All Australians (even those with disability) Count would should have been more careful in publishing such an opinion. Especially as the NDIS was developed to support those needing the most supports to live a good life, that is, the Alexs in this country; not the Georges.

    Dr Taleporos is hardly representative of the majority of people with disability in Australia for, as many published articles and papers have already confirmed, most people with disability, particularly those with significant intellectual and complex disability, are living in poverty with their family with few supports and systemic discrimination. This systemic discrimination can be observed even to the point of being denied representation by the disability agencies charged by the government with providing policy input through consultation with those people.

    This silencing of the voices of the people with no formal communication skills, who are dependent on others to be their voices and representatives, from even within the disability sector of Australia is truly a matter of concern. To silence those representatives for people like Alex and my daughter, is to ignore the specific needs of their form of disability and part of their individuality. It denies recognition of their particular living requirements. In failing to recognise that they need many forms of assistance including the ability to understand and express ideas, not all of which is solved by Augmentative and Alternative Communication (AAC), is naïve at best.

    Insisting that all people with disability have the capacity to make complex decisions about themselves and their lives is questionable and even the recent ALRC report accepts that this is not the case by their inclusion of “Section 4 Representatives”. To remove the rights of Alex and others to have their needs and wants met by representation is discriminatory. For people with the intellectual and communication skills which allow them to self-represent to state that “all people with disability can ‘talk’ for themselves” because they have no need for verbal or written representation, is the equivalent of removing aids such as George’s wheelchair because our family members with intellectual disability are ambulatory. It is Intellectual Ableism at its finest.

    As to the apparent missed opportunities of the article such as the purported benefits the NDIS, there is a word limit to the journalist’s article and unless the story was run as a series, then it must be limited in its scope. Alex and others with a similar level of intellectual disability, such as my daughter, are currently awaiting the NDIS with little knowledge of what positives might bring to them and their families. From online discussions, I know that the fallout from the transfer from the state-based NSW system to the federal NDIA has been traumatic for a number of people. In Western Australia, where my family resides, the people with disability have seen the process stall and the regular attempts by the WA state government to remove real choice from people with disabilities does not provide a sense of confidence.

    For those without the political and disability sector clout of Dr Taleporos, the article on Vanessa and Alex is one way of expressing their views. It may not have all the current catchy phrases, theoretical ideologies and nuances that, as an academic George has at his fingertips, but it is one way of expressing their concerns. For them, this is the way that they live and it is a warts and all story. Life is not always pretty; we all have issues and bad habits that we may or may not choose to share with others. This story may or may not have parallels with your experience or that of your family, or even other people with disability that you may know, but it does with many other people as I have seen in discussions over the past few days. I doubt it has many equivalents with people with disability like George, who are intelligent, educated, articulate, and conversant with various types of media. People who are, most importantly of all; able to self-represent.

  • Peter Gregory

    Thankyou for writing this article George. Thankyou for stepping into this volatile space to present an alternate view…. a view that is vigorously overlooked and patronisingly put to one side in this lop sided world of charity, specialist services and a community grappling with difference.

    The labels “severe”, “profound” have indeed become the keys to a portal that leads into a parallel universe where individuals are no longer citizens. They are characterised by what they cannot do, represented as a “burden” and seen as incapable of making a contribution to the community. These labels become the means by which citizenship is slowly stripped away and the options for community life slowly diminished with many finding themselves living with groups of people they do not know, in places they did not choose, supported by strangers who come and go. These labels allow a dominant narrative to exist that dehumanises and shuts down the possibility of exploring the person behind the label. This dominant narrative has been all pervasive and even with the advent of the community living movement over 40 years ago it has changed very little. This narrative, armed with a host of labels and bolstered by the siren call of funding, claims that there are some for whom the opportunities of citizenship are not possible: They are the other. Indeed this narrative has been so strong that it has infiltrated the very soul and consciousness of our society so that it is seen to apply, in so many ways, to all those with a disability.

    It is this narrative that is here at play in this article. It is this narrative that has deeply embedded itself in the journalistic psyche and the consciousness of our community.

    George’s article invites a different awareness, to understand a different relationship between citizens. Relationships that ask questions like “I wonder how the world appears from the perspective of those who are ascribed these labels?”, “I wonder what would make social and economic participation real in their lives?”, “I wonder if we would write this story about some who did not wear these labels?” These are questions that evoke possibility, allude to potential, recognise that all citizens (irrespective of the support they require and the labels heaped upon them) will make a contribution if they are released from the parallel universe. These would not be narratives of inspiration, or overcoming great hardship, they would be stories that disrupt and challenge the assumptions of what is “normal” and what is “disability”

    Like those who have contributed to this thread already, I know many who have have been attributed the labels of “profound”, “non-verbal”, “high-support” who are now playwrights, poets, performers, musicians, business owners because that is what they bring to the community, rather than being characterised as “burden” or even “inspiration”. Through the use of AAC and a host of other strategies these individuals have been able to lay bare the shackles of those debilitating labels, however every time the public discourse returns to the old stereotypes these individuals are required to defend themselves, their choices and their communication.

    The NDIS offers genuine opportunities for transformation. This transformation will only occur if we change the conversation and liberate ourselves from the assumptions about who a person is and what they desire for themselves that are so intimately entwined with the labels we use to categorise “levels of support”, “capacity make choices” and “functional ability”.

    It is not for those who are ascribed these labels to change this conversation. This is the task for those who given the labels.

  • Glenda Lee Vđ

    I don’t think that any disabled person on here has said that life IS NOT hard for Parents/Carers who have been left with the work of endless support . What they are saying is that the portrayal of Alex is insulting and negative and leaving it in the air which just leaves people only thinking of Alex as a burden and a freak (Yoda). His house is described negatively and his support is not good but no attempt is made to discuss how that can change with the NDIS.

    Parents have and do have it tough that’s for damn sure. But so do the Alex’s of the world. Even if the article is about the tough lot of the Parent/Carer then there is no need to paint Alex as only negative things. It appears the author wanted to take the line of pity porn instead of the line of Human Rights Outrage – the human rights of parent/carers and the human rights of disabled people. THIS is why we are angry.

    And people like me who have a severe physical disability and can do little to help myself DO 24/7 hard yakka looking after ourselves with assistance from support workers if we are lucky to have them/enough. We suffer, get exhausted, NEVER get a break for even one second. People see us sitting in our wheelchairs and talking clearly and intelligently and think that everything is just apples for us. It’s not. I am denied many pleasures, my body hurts all the time, I get left out of lots of things cos I don’t ‘fit’, I struggle to move even small things like a cup of tea or papers on my desk, I worry and am scared for my future, I work to exhaustion to live life very ordinarily. And I have been doing this for 60 years non stop.

    Please do not tell us that we do not know suffering nor know the endless relentness ness of it. We do not tell you those things. We are not making this about parents vs disabled people or vice versa. We are making this about disabled people vs pity porn ableist journalism.

    Please will you understand that. We are not attacking parents. We are not saying that parents don’t know. We are not saying that we do know a parents perspective although some of us do like Samantha Connor who has considerable “Carer” responsibilities of her own.

    We physically disabled verbal people are NOT your enemies. I say this in the interests of peace and harmony in the huge fight that we all, disabled and carer alike, have for our human rights. The fight against Ableism which hurts us and our parent/carers (if we have them).

    • Bella

      I do not think anyone here calls people with other types of disability from their family member ‘the enemy’ I think we say that disability is very diverse and people with physical disability have very different needs and very different relationships with family and very different levels of both capacity and communication.

      We are though, saying that your voice is not our voice and nor is it the voice of people who cannot self represent. Your life experience is different to ours and very different to that of our sons and daughters and unless you have lived our life which is very intertwined with our sons and daughters, you like us regarding your needs cannot really know. It is as simple as that.

      Below Mr Gregory says “The labels “severe”, “profound” have indeed become the keys to a portal that leads into a parallel universe where individuals are no longer citizens”.

      We say that citizenship is denied to our sons and daughters because they do not have the legal capacity to self represent and therefore live in a legal void. It is about legal capacity, something you are legally accepted as having or not. Without legal decision making representation our sons and daughters are actually denied full citizenship by all institutions from banking, government agencies from Centrelink to housing etc.

      You either have capacity for these things or not. If you do not know what a lease is and do not have the understanding of the ramifications of being a signatory on a lease, you simply cannot be a signatory. Same for banking etc, opening electricity accounts, debit accounts, phone accounts. This also extends to implementing your NDIS plan. It is not so simple as Mr Gregory portrays. The NDIA understands this, it is why our sons and daughters have a thing called nominees…

  • Vanessa Browne

    Over on the Good Weekend Magazine Facebook page Frank Calabrese wrote yesterday referring to The Able Movement as “More Ableist claptrap” and went on to write “they are FRAUDS…their aims and objectives… they do NOT represent all ppl with disabilities…2 of the Board had their disability as a result of an accident…they do NOT represent those born with a disability…you nor THe Able Movememnt speak for me and I have as much righnt to criticise them”. [sic]

    Is this an example of ‘Ableism’ against people who have acquired disabilities after birth by accident?

    To me this feels like some other kind of ableism, such as “intellectual ableism” or “you are not as physically disabled as me ableism” or “you haven’t been disabled as long as me ableism”.

    Frank and George do not “speak” (oh, how Ableist to say “speak for” in relation to people without verbal or oral language ability) for Alex.

  • Peter Gregory

    For people using any form of AAC, it is not as straightforward as walking up to a computer, turning it on and sitting down to type. It is not as simple as picking up communication board to express their thoughts. For many the sheer act of typing through a communication device can be demanding and emotionally draining. These forums are not their natural domain, because these are environments that don’t lend themselves easily to the requirements of those who require preparation and significant assistance to communicate. Many who have found their voice through AAC strategies have also experienced vilification and derision… The disbelief that there are some who challenge the conventional wisdom of what disability means and the ineffectiveness of debilitating labels has left them wary of expressing themselves in forums where they believe they will be further derided for their efforts. They choose to express their thoughts in places that they regard as safe and will be free from the abuse so many have experienced for so long.

    Perhaps over time we will see more and more people who have thrown off the identity of severely disabled entering into these conversations. But to do that they will be looking for acceptance of who they are, not what some incomprehensible assessment says they are. They will be looking for a kinder, gentler more accepting place they doesn’t seek to bring them down because their intelligence doesn’t match the dominant myths that pervade the disability sector of what a person who cannot speak should be.

    • Sue Oreilly

      Peter, your last sentence demonstrates very clearly that you are completely confusing the ability to communicate in a physical sense – through speech, or by typing, or via AAC – with the ability to communicate in an intellectual and /or cognitive sense. Of course, there are vast numbers of people who cannot speak or have great difficulty physically typing – such as Annie McDonald, to give that example again, or my late son Shane, or now, as he has clearly demonstrated by his contribution, Adam Cope – who are bright and smart and intelligent, however misdiagnosed and mislabelled they may have been at some point by clinicians and others who (exactly as you are now doing, ironically enough) completely confuse the ability to communicate physically with intellectual ability.
      You say elsewhere on this site that there are people who have been wrongly labelled severely intellectually disabled, solely because they could not speak, who have gone on to be musicians, businessmen, poets, writers and so on. And that’s absolutely true; look at Christy Brown, for instance, the author of My Left Foot. But Peter, all that proves is that these people were obviously misdiagnosed and wrongly labelled to begin with, exactly because of the confused thinking mentioned above! And which yes, happens, of course it does,and is a terrible thing.
      But none of that in any way proves or supports what I take to be your contention – i.e. that actually, there’s no such thing as severe and profound intellectual disability, and nobody in the world who actually is severely intellectually disabled. That it’s all just a derogatory “identity myth”, imposed by human rights abusers determined to “bring them down”, which according to you can be “thrown off “.
      Well, Peter, I don’t know how many people you’ve met or know or have had any contact whatsoever with who actually are profoundly intellectually disabled and not just wrongly diagnosed, but I have met many and the reality is – none of them could contribute to this type of debate in any way. And to say so is not to be unkind or ungentle or in any way to disparage their human worth or deny their “citizenship” or anything else; it’s simply fact, And if you and others don’t believe me, as you clearly don’t and never will, and are simply incapable of understanding that communication difficulties and profound ID are two entirely different things, then may I suggest you spend a day or two with people who actually are profoundly intellectually disabled – Alex perhaps? – and then opine again?
      And I’m sorry if this all sounds a little terse and irritated, as it no doubt will to some, but it’s actually really aggravating trying to have a sensible conversation about the subject of profound intellectual disability with “well-meaning people” – to paraphrase Alex Cope – who simply don’t know what they don’t know about this particular subject.

      • Hannah Potapczyk

        I agree about this. While not severely disabled myself, high functioning austism, I totally understand the difference in communication. With severe intellectual disability there is a “brain” or cognitive difference in how you literally think or process information. Autism and being on the Autistic Spectrum like myself is similar to this. I myself before the NDIS came to my area, was regularly frustrated, used physical forms of communication.
        As you can see this has now changed. What I really don’t like about the themes of the “haters” so to speak of the Good Weekend article is the disempowerment of Alex AND his mum. We ALL have had different experience of life both good and bad. All of us have the right to communicate this. After all, the GREAT things look even better if the “bad” things, or things we would love to change about our lives are talked about first. We all have the right to talk about the things we want to change or need help with. What nobody has talked about is not just the support that Alex needs, but the support his mum needs as well. It would be just as frustrating for his mum to see Alex like this as it would be for Alex himself.
        Whether you agree with the article or not, Alex and his mum has the right to express how their lives are now, problems and all!

    • James Randi

      Not all AAC is created equal though. Facilitated Communication doesn’t count as AAC for example. Its been widely discredited by professionals and the wider scientific community. Personally, I believe that FC can work with certain people and I’m certain that the facilitators are coming from a place of compassion, but far too many are deluding themselves into believing true communication is occurring, when it is not (If all the communication is genuine then proponents have a moral obligation to prove it through rigorous scientific evidence).

      Disadvantaged people are being used as puppets to make able bodied persons feel good about themselves. In trying to give a voice to the voiceless, well-meaning Facilitators are denying disabled persons any semblance of true, objective self expression. It’s unethical, disrespectful, unjust, incompassionate, and undignified. FC does more harm than good. It belongs with the awful standards of disability care and support of yesteryear.

      Self expression MUST be objective, there should be no doubts about authorship. Even if a nonverbal person isn’t a poetic genius waiting to be freed from the prison of their body, they still deserve respect. Even if they don’t have anything to say, THEY STILL DESERVE THE TRUTH.

  • Adam Cope

    Your absolutely spot on George. People who have been marginalised for life deserve better. I was alone for years until I got a voice. It’s sad that others have to be kept back by well meaning parents. People with an intellectual disability have far more potential than is often displayed by their actions. For me the use of planning and working on my strengths has helped me to believe in myself.
    Many people with poor cognition are often diagnosed with a severe intellectual disability. The NDIS will benefit all who have been left out of life’s joys. Every day for me is a challenge, yet it’s worth it. To be believed, is far better than being alone and forgotten.

    • Sue Oreilly

      Thank you so much for your contribution to this discussion Adam. It is wonderful to finally be able to read a comment by someone with the type of disabilities you have speaking out on their own behalf, rather than others always speaking for or about them, as (far as I’m aware anyway) always happens otherwise.
      Exactly as George says in his opinion piece, “the dignity and voice of the person with disability needs to move from the margins to the centre of the story.” So wonderful to finally see this happen! However, I must say that your comment is so articulate, well-expressed and intelligent, you clearly do not have any form of intellectual or cognitive disability, and it must be very annoying for you to ever be presented as such? Exactly as you say, people who have communication difficulties are often said to be intellectually disabled when they are not at all (e.g. Anne McDonald). My late son, who like Annie was very severely disabled with cerebral palsy, was assessed by several psychologists as having severe learning difficulties and intellectual disability, but in fact, he was as bright as a button in many ways, with a great memory and wicked sense of humour (which I always take as one indication of very high intelligence!) even though he never managed to learn to read or be able to write. Clinical/medical labels and diagnoses can be very inadequate and misleading, can’t they?

    • Bella

      I am so glad you ‘got a voice’ and were able to prove through your excellent cognitive ability and your terrific command of language that you do not in fact have an intellectual disability at all Adam. Must have been such a relief for you to have been able to cross that off your diagnosis and have it understood that you can control your own life and make your own life choices.

      Such a relief for your family as well because many of us parents worry what will happen to our sons and daughters when they die. At least your family will know that you will be able to take control of your own life, be supported to express yourself and define the directions you wish to travel…

      You have given me great heart. It also shows how medical assessments can get it so damn wrong and that we should never simply give up on being told something that is absolute rubbish until we have been able to ascertain the truth.

  • Jennifer

    No one has “zero quality of life.”

  • Jennifer

    And citing Peter Singer does not fill me with confidence that you’ve remembered disabled people are people.

  • Bronwyn

    George you are so right, and parents often give this point of view of looking after an adult “as a child” because this is the way they have been treated with their family member by some teachers, other parents and it is lack of education. If people were provided ( small children) with the expertise and parents given education about their childs lack of speech and why they present in this manner then maybe we could evolve. Yet we have departments such as DHHS who refuse to provide the necessary expertise to our family members to learn how to communicate instead of use behaviour as a means to do so. Carer education is becoming lower in standards how on earth are they going to value the person’s attempt to communicate. I recently spoke to a nurse who saw no problem with the shackling of a young man with autism in a hospital, reported as 9months which I have been informed more likely 12 months. When people think this is okay? How can we ever uphold human rights and respect for people with language impairments. This needs to be demonstrated by those in the public eye. Our politicians who do not intervene and allow DHHS to continue to perpetrate mismanagement and create trauma for those with communication difficulties and then blame it on them the person with the impairment. They are “naughty” “aggressive” “abusive” without concern for the frustration they put the person through because they cannot express apart from using their behaviour. DHHS continue to label our family members in this way due to lack of education , knowledge and inability to apply what they have been taught. Leading to a service that is focused on supporting staff, not the person with a disability. They should be supporting language and communication means in the beginning of behaviour of concern developing, not leave someone to continue to express their needs by becoming frustrated and not supported. Interestingly, recently the OPA and DHHS blamed the hospital for this young man treatment when he was not requiring to be in a hospital as no medical need as the original reason for admission was rectified. However, those who should be upholding peoples human rights DHHS and OPA prefer to transfer their wrongdoing and reflect this as a hospitals fault? Dissolving themselves from their responsibility and not intervening after 9-12 months until the media steps in! Appalling! There is no justice or human rights in this country when people with a disability are treated like prisoners and what crime did they commit? It is all about occupational Health and Safety of others despite knowing that there are far better ways to support a person in crisis by providing a safe ward with the right expertise just like someone in mental health would be able to access. Adults with autism and/or intellectual disability do not have any crisis intervention centres, they are not admitted to mental health and remain shackled in medical wards due to DHHS refusal to support them. This is not an isolated incident this has happened to my son, I know of others the same. This needs to stop. We are treating people with a disability with no equality, those who cannot communicate are at the mercy of those who have no accountability for the services they provide to them. Who makes DHHS accountable?If DHHS supported families before a crisis then it could avert a crisis, however, in my sons case we pleaded for help they said “get the police” then a cycle of hospital admissions, DHHS continue to give appropriate experts and support, we are tired and have to give up, they take our family like he is a prisoner and refuse to allow his return as they refuse to put in the same supports or expertise to ensure success. It is all about control, treating people with a disability as having no say or rights and families get banned to prevent reporting the mismanagement in care. Australia is not any better than a third world country the way we treat the disabled and Politicians refuse to reply to our concerns as they seem to have no power to change anything. Has anyone thought, when politicians are voted in, then why don’t we extend this to people who hold powerful positions in DHHS? food for thought as nothing changes unless those in power change!