Person's with Disabilities - Recording
Please find below a recording and transcript from the Person's with Disabilities event on Tuesday 8 November 2016 at the State Library Victoria.
Dr Dianne Ashworth
First recipient of bionic eye transplant and Lecturer In Social Work, Deakin University
Professor Richard Dowell
Graeme Clark Chair in Audiology and Speech Science at The University of Melbourne
Professor Helen Herrman
Director at Orygen, The National Centre of Excellence in Youth Mental Health
Mr Graeme Innes AM
Previous Disability Discrimination Commissioner
Professor Anne Kavanagh
Director of the Centre for Women's Health, Gender and Society, Melbourne School of Population Health, University of Melbourne
Moderated by Jon Faine, host of the morning show on 774 ABC Melbourne.
Banner image: 'Not titled' by artist, George Aristovoulou 2015. With thanks to Arts Project Australia.
Jon: Thank you, Bernadette. Thank you, Trevor. We’ll hear from our speakers in simple order. I'll ask them a question or two as we work through. There's an opportunity then for the speakers to engage with each other and plenty of time for you to engage with each other and with them. Many of you have come along specifically to do so, and we'll make sure that it happens.
A few quick remarks from me first. I want to congratulate the University of Melbourne. There's a couple of hundred people here engaging with ideas on a Tuesday night when you’d have every reason to do practically anything else except come to the state library and exercise your brain. I salute you for coming along. I salute the University for having a commitment to public engagement and communicating some of the otherwise rarefied ideas of the academy in language that citizens can understand and engage with.
We see what's going on around the world. I'm confused as much as anyone. I don't understand where the hell the place is going, but it sure doesn't fill me with excitement and optimism, but then something like this comes along and you say, "Well, look, citizens get together. Respectfully engage. Agree to disagree. See things from different points of view." We've got a meeting of disciplines. Not a clash. A coming together of minds and ideas. That can only be a good thing.
Yes, indeed, the language of the law and the language of medicine sometimes almost seem as if they're foreign to each other. Well, maybe today we'll find all sorts of common ground.
There's a hashtag, ladies and gentlemen. I hear the collective groan. No, no, no. Twitter is potentially a wonderful tool if you can resist the temptation to use it for all the bad things that can happen. #disabilitytalks. One word. #disabilitytalks. In that way, if you'd like to, you can engage through the platform of social media, as well as physically in the courtyard here today.
There are toilets at the back of the room in the far corner in the opposite side from where I am here.
Could I ask you, just finally, before we hear from our first speaker? Could you do the courtesy of checking if your phone is on silent? Nothing is worse than having someone's ringtone interrupting when you're deep in thought or concentrating on what someone's provided.
When we get to questions, there is really only one rule. Please be respectful. Ask a question. We don't really want five-minute speeches and monologs from the floor. If you have a question, could you direct it to a member of the panel rather than the entire panel? Because if you ask a question of the panel, you're really asking five questions, and that's not fair. Keep that in mind. If you want to introduce yourself at the time, that helps, too, as a courtesy. If you've got reasons not to, we totally respect that.
One other very brief announcement. You'll see on the published notes. Jody Barney Deaf Indigenous Community advocate is down to be one of the speakers. Unfortunately, at the last moment, she's not been able to be here, and we wish her all the best.
In her place, and very much at the eleventh hour, we thank Professor Anne Kavanagh, who you'll see on the stage, who's quite literally come off the interchange from the Centre of Research Excellence in Disability and Health Centre of Research Excellence in Disability and Health at the University of Melbourne. Thank you very much for being prepared, completely off-the-cuff, to speak to us today.
Our first invited speaker is the outstanding Australian, former Disability Discrimination Commissioner, Graeme Innes. Could you make him welcome? Thank you, Graeme.
Graeme: Thanks very much, Jon. Thanks for the opportunity to be involved this evening. I want to start with a quick anecdote about Jon because it tells you that he shares my approach for a positive attitude.
About ten minutes ago, I said to Jon, "Jon I've got a problem. This microphone is handheld, and I need my fingers to read my notes." Rather than saying, "Oh goodness, where can we find a microphone stand?" or "Can we get some other way of holding?" He said, "Since when have you ever needed a note?" Thanks for that, Jon.
The beginning of my autobiography tells a story about a fight, and how as a blind twelve-year-old, when the fight set up had to be urgently moved, it was a challenge for me to help. Then my dad solved the problem. He said to me, "Come and drive the lift."
A static job. It was opening and closing doors and turning a handle to get the left to go up and down. It was using sound, which I could do, and it needed determination and persistence if I was going to drive it all day. He knew my skill set, and he just played to it.
I think that is ... I use that story at the beginning of my book because for me it's the hallmark about the way that we should deal with disadvantage. That everyone comes with strengths, and we should look to and play to those strengths.
I was born blind. I don't know why. The consensus is that there was ... The current consensus is that there was some contact with a chemical during the time that my mother was pregnant with me, but not everyone shares that view. There's been a few other theories. I'm sort of what Ron McCallum happily calls, and he's one as well, an ophthalmologist failure because there was nothing that they could do and there still isn't.
I have a view that it's not my disability in the main which restricts me. It's the barriers which our society erects. The information only in print. The websites which have images, not text. No consistent physical environments. Security people who don't think that I should go into a place because of my guide dog. Things like that. It's not my disability that restricts me.
Would I take a cure tomorrow if you offered it to me? Well, yes, I would. I would be prepared to give the alternative to not being able to see a chance and have a crack at it, but I know many others who wouldn't, and I respect that view. They say that their disability is a part of them and they wouldn't want to change that. They say that they wouldn't want to deal with all the extra sensations that vision would cause. I respect that as a valid view, although it's not my view.
I'm not opposed to cures. I support reasonable investment in them, and I think society should do that. What I don't support is the campaigns sometimes used to gain that investment which reinforce the negative view of disability. "We must cure blindness because we can't live quality lives without sight." Of course, this is simply not true, but in their zest to fundraise, institutes which conduct those sorts of cures often go too far in that process.
As well as curing, I think we should also accommodate. Our society should ensure that it treats people with disabilities equally to others. I don't subscribe to the Peter Singer Theory that we wouldn't spend $30,000 on training a guide dog because it would be better spent on operations to save sight in countries around the world. I actually think that with appropriate balance, we can do both.
Do we cure? Yes, I think we do, where we can, and where that's what people want. Do we accommodate? Yes, I think we should because in my view, those are the hallmarks of a decent society.
Jon: Thank you, Graeme. Is ... Are you hinting that somehow fundraising for charity is perpetuating stigma?
Graeme: Sorry, that was a ...
Jon: Is fundraising for charity perpetuating stigma?
Graeme: Oh, much of it is. Yes, absolutely. Much of it is. There's a campaign just being run by the Save Sight Foundation in the United States, which encourages people to take videos of them wearing a blindfold and carrying out normal actions in their days.
Whilst I'm not opposed to people getting a sense of the impact of blindness or vision impairment by putting on a blindfold and trying it, I am opposed to showing videos of people who've never experienced that disability, who in all likelihood will make a terrible mess of the particular daily tasks they're carrying out, and reinforce the negative view that that's how blind people operate. Because it isn't, and that's not how we operate.
I think many charities cross that line. I think that they do a lot of damage. I'm actually speaking at the AGM of a charity in a couple of weeks, and that's the question I'm going to talk about.
Jon: Isn't that a kind of walk-a-mile-in-my-shoes exercise that they’re maybe trying to experience for people?
Graeme: Yes, I think it is and I'm not opposed to that. What I'm opposed to doing is reinforcing the negative view about it by putting a video up for millions of people to watch on Facebook.
Jon: All right, we'll come back to you and I'm sure you even have much to say when we get to the later part of this session.
Our second speaker today is Professor Richard Dowell who's the Graeme Clark Chair in Audiology and Speech Science at the University of Melbourne and runs the Cochlear Implant Clinic. Thank you very much Richard.
Richard: Thank you very much Jon. My expertise in disability and the issues raised by today's discussion comes from about 35 years working with people who have hearing loss and that's a complex field indeed. Our work in developing the cochlear implant or bionic ears as it’s often referred to, has provided significant help for adults with a quiet hearing loss or people who've grown up with hearing but then have become deaf and for children who are born with hearing loss.
We continue to undertake research related to the device and the procedures to improve outcomes for almost half a million people around the world, so we're very proud of how this has helped right around the world.
The cochlear implant undoubtedly represents a medical model. An approach that is used with severe hearing loss as a problem and something that we've tried to fix so it definitely fits in that category. For centuries though, those born with severe hearing loss have used sign language that is visual communication and we're seeing that today as their natural language and do not necessarily say their hearing loss is something that needs fixing.
The culturally deaf sign language group have at times opposed the use of cochlear implants particularly in children and there has been some tension over the years but the world does not divide neatly into hearing and deaf people. Many people, in fact almost everyone over 60 years have a significant hearing loss but only a very small proportion actually have a total hearing loss, that is totally deaf.
There is also a substantial difference between being born with deafness compared to acquiring deafness later in life due to the effects on the development of spoken language. We actually don't really hear with our ears. All our meaningful hearing is done with our brain. We learn to hear and develop the extraordinary complexity of spoken language mostly within the first three or four years of life. Even the first few months are important, a long time before the baby says his first piece or her first words.
People who had hearing in their childhood have a brain that has developed all these abilities. When we give them an approximation of hearing with the cochlear implant, they can learn to decode the information and make sense of those signals. Results have been astonishingly good, even beyond my wildest dreams in fact. Although they can vary for a multitude of reasons and these people still have a hearing disability so we have not cured the deafness, not completely.
If a person is born deaf, the hearing and language parts of the brain are connected differently so that even if you restore hearing later in life, the brain mechanisms are not present to decode the information and make sense of spoken language.
Language is so important to humans, arguably the most important thing for human civilization that we must make every effort to help infants with hearing loss to develop language in some form. Sign languages have developed out of this need and they provide an effective alternative method of communication for this group but it is still difficult in the modern world — mostly a hearing world as very few people have actually learned how to sign.
It has become clear in our work that the best outcomes in terms of hearing, speech and language for children receiving cochlear implants occurs when they received their implant as early as possible. We now observe the children with profound deafness implanted before 12 months have every possibility of developing speech and language equivalent to hearing children thus broadening their educational and social opportunities.
The bionic ear though has reduced the numbers of children who rely on sign language. This may lead to a reduction of persons who identify with the culturally deaf sign language community and this is a very difficult prospect for some within that community. The suggestion has been made that the cochlear implant should wait until the child can decide for him or herself but unfortunately at that age, it is too late for the cochlear implant to be effective. It's about those early brain connections that happen much earlier than we think.
In any case, most deaf children about 96% are born to hearing parents who generally express their desire for their child to grow up using spoken language, so I hope that introduced some of the issues that we face in the disability of hearing loss. Thank you.
Jon: Thank you, Richard. If signing is a language like a native tongue then won’t we be avoiding it’s extinction. We devote resources to preserving languages that face extinction in indigenous communities, for instance yet you're working actively to make extinct sign language.
Richard: Well, I don't think we’re directly, actively working to make it extinct. I don't think it will ever be extinct because there are children who cannot have a cochlear implant for various reasons, who are deaf and will need sign language. The number of people who need sign language for their communication had been reducing over the years well before cochlear implants came along. That is a smaller group and it will be probably a smaller group in the future but I don't think it will be the extinction of that significant language. In fact we should try to preserve it as has been done for other languages that are only spoken by a few.
Jon: Why, if it's a relic?
Richard: I think I'm the wrong person to answer that question, really.
Jon: But you're in the panel so …
Richard: You could ask someone who is a sign language user and understands that that's part of their identity and I'm sure that they would say "It's extremely important to preserve sign language for the utility it provides for people who are deaf and into the future and to preserve that aspect of deaf culture."
Jon: Well, it will be a fascinating discussion if we get there in the open session coming up shortly. Thank you very much indeed, Richard Dowell.
Our, third speaker coming in off the bench ladies and gentlemen, Professor Anne Kavanagh, from the University of Melbourne, Centre for excellence on disability and health. Thanks very much, Anne.
Anne: Yeah, I'm completely off the bench and I'm different. I wanted to meet Jody so that's a pity really because I'm not going to meet her and I'm going to talk instead.
What Bernadette said today is ‘why don't you just tell your own story’, and that's probably the ... Which is a mixture of being an academic, and activist, and all of that mixed together. Fast forward to being 23 and I was a doctor. So I started off as a doctor. I guess I still am a doctor but I just don't see any patients anymore but I always had this passion for public health ever since I was quite early in my medical years and so, after a few years hanging around the wards, I went off and did a PhD in public health in epidemiology, very much driven from the social justice perspective.
Very interested in how people came to be sick, not how to treat this sickness, not just how to treat this sickness. Very interested in the sort of social and economic determinants of health, employment, housing, everything like that. [inaudible 00:19:14] I became an expert in health and oncology research particularly in issues around where people live, how that affects the choices of food there, how that affected their physical activity levels, how their employment, how the kind of jobs they had or if they'd have a job at all affected their health.
Then fast forward a bit more, 2002, my first son was born and clearly within quite a couple of years it became very clear that he had significant developmental delay. He was diagnosed sometime down the track with severe autism, a profound disability, just the intellectual disability and whatever other diagnosis that you want to throw at it because that's what everyone does but some type of having profound disability.
I was very much introduced to a very different world which I could talk about for a couple of hours or maybe two days or why go into that but I was reminded just yesterday when one of my Facebook feeds, an article that I think I've seen before. It keeps going around about ‘My child's not special, he's my brother’ which people remember that song of like 'He's not heavy, he's my brother'. It's a really great piece and I, because everyone keeps talking to you about your special-needs child and for us, what I've experienced is that my special so called “special-needs child” is specially marginalized from society and we've seen that as many parents have in terms of the education system and so forth.
Fast forward a bit more to 2011 and as if I haven't learned enough about disability at that time and I became quite unwell and was diagnosed with multiple sclerosis in August 2011. I've been moving into disability in health and thinking about the health of people with disabilities and I really just had a big bang on the head and said, "Well, you got all these skills Anne. You better turn around and do something useful.”
One of the things that really struck me with that was ... By then, I was already a permanent professor at the University of Melbourne and I was able to negotiate quite differently through a system than most other people. I was incredibly fatigued. I was able to bring a little, and I still do. Have a little mattress in my office that I'd lie down on in the middle of the day. It used to be for two hours, now it’s for 20 minutes [Inaudible 00:22:05].
I didn’t need it but I was quite immobilized. I was able to have a little respect and I was able to negotiate different sets of conditions. I could work from home. I imagined if I was just out of Uni getting my first RA job, it would have been quite different but what it showed me was I could actually still work and that was incredibly important for my well-being.
Hence, my main concentration as anybody, people with disabilities want to do the same thing as other people. We want to work. We want to have decent houses to live in and those are all the kinds of things that make critical things for people's health. In terms of employment which is probably my passion, Australia does incredibly badly. When we talk about cure at [Inaudible 00:22:53], we have to talk about employment. We have to talk about economic and participation. We have to talk about education because those are critical determinants of health and they drive some of the poor health and well-being outcomes with people's disabilities particularly those unrelated to their impairments and I could go on. That's where I see it, disability and health is trying to look at, what are those social determinants that are driving the poor health outcomes with people with disability so that's where [inaudible 00:23:21].
Jon: Thank you Anne. Do you ever hesitate to tell people [inaudible 00:23:28] your diagnosis of MS or your son's?
Anne: It's a bit hard for me to talk about what I do without talking about it. Someone said to me, "You're going to tell everyone that you've got MS. You're going to come out about that diagnoses.” Since I've been sick and going home from work with such bad vertigo and not able to walk very well, people were kind of clear that something is happening to me. I thought that that was really important to do. I do feel like it's really important to do. I think it’s part of my story.
In terms of my child and in fact more than my MS diagnosis that has being profoundly shaping of who I am in the world. It's brought me in contact with all kinds of families, some incredibly disadvantaged, some incredible discrimination and attitudes that I just never believed were out there. They're my story and that makes me do what I do. I have to. I do it.
Ann: I'm more powerful than other people too so …
Anne: People like I do it, it’s better for everyone else, I feel like.
Jon: Does it change the way people respond to you? Do you notice a shift when they label or do they label you and does it affect the way they perceive Anne Kavanagh? Do they look at Anne Kavanagh and go, "Oh, she's the professor with MS"?
Anne: It was a great question because very soon after I was diagnosed, my career was kind of going up pretty well. I was a young professor. I thought, "Oh my God, no one’s ever going to ring me up with those cold calls saying “Will you please apply for this new Chair at a University that we're setting up and we’d really like you to apply for it?” That was my thought. I said it to someone else and they said, "Yeah, that won't happen to you again." They agreed with me.
I would like ... All right, I think that's actually bullshit now to tell you the truth if another university go hold of my thought about my [Inaudible 00:25:36] and the other Category 1 grant support in the last year, they'd be ringing me up. I think I'd get that Chair but it is ... I had lowered my expectations of ever moving someplace else, both personally and other people had said that to me.
Jon: You can see already where we're talking about limitations from medical knowledge, limitations from societal expectations but also individual ones and even self-limitations before we've even got halfway through the panel. I think we can see where we're heading, can't we?
Next speaker … Yet again tonight, can I emphasize that Anne has spoken off the cuff with really no ... She came along with no expectation of being on the panel so we're doubly indebted to you.
Next speaker is Doctor Dianne Ashworth, the first recipient of the bionic eye transplant. Thank you very much.
Dianne: Thanks everyone. Well I'm doing this on top of my head too. I didn't bring any notes with me but I'm vision impaired. If I want a dramatic response I’d say, "I'm blind" but I can still see light and dark. I've got Retinitis Pigmentosa.
When I was diagnosed in 1994, I never thought that I would be diagnosed with something like this. No one in our family’s got it so it's a sheer shock. I can remember looking at the pictures that had been taken behind my eyes and the doctor explaining to me, "This is not a normal retina and you're going blind." My whole world just dropped out from under me.
Then to adjust ... I actually adjusted quicker than everybody else around me. I had a small son and my first thoughts went to him. You talk about how other people treat you. I was quite open with it and I was having lunch with a couple of girlfriends who I used to work with and so I said to them, I said, "Oh I just found out that I'm going blind." Well, within about five minutes, we’d packed up and gone home.
I learned that I couldn't be open with my diagnosis and I'm listening to all the other speakers here and I'm agreeing with everything that's being said. That idea of you being accepted as equal is something that really, it burns with me. I fought the idea of disability and rather would like to say that everyone has a difference. I like that idea that everyone has positive attributes.
Why I'm here tonight because I've got some more to add too. I've got the academic behind me too. I teach with Deakin University. I teach social working community development but I was also involved with the bionic eye trial. Once I found out that it was safe, it was quite exciting to be ... I was actually the first research participant so I never knew whether it was going to work or anything but I trusted everyone but I had a tension the whole time I was doing the trials with the scientist.
The tension that I felt was, "Why am I here trying to fix something that I really believe that people should accept me for who I am. I'm happy with who I am. I'm sitting here trying to bring in this cure for the blindness." It wasn't normal sight that I experienced and I will say it was for two years that I trialled this bionic vision. Depth Perception is something that Australia is going to introduce. It was going to have to do for bionic vision and that was fantastic.
Still, still not putting or join the dots between that cure and accommodation.
Until the last week, we walked around the block and we have semi-portable unit. I went into the cafe where I had lunch every day. I was there, and Joe was behind the counter. I could see Joe using the spots of light or the bionic vision and as I say, it wasn't normal vision but my whole ... I just had this huge smile on my face because I connected with the person who was in front of me.
Not only is it going to be beneficial, I learned, for getting around and it's going to be a vision that has to be learned but it's also a vision that connects you to your social being.
I think when we talk about internalization of how people see themselves ... I used to say people who are blind to think they were the other and then I turned into the other, so you internalise it. Yeah, so I think that this ... Well I say this artificial vision is still not going to be normal vision and you're not going to be a normal person as such. It is something that's going to connect us to our surroundings so that's what I've done off the top of my head.
Jon: It’s fascinating Dianne. You say that you're happy with who you are, ‘accept me for what I am’ but then when the dots meant that you could connect with the barista making your coffee, it put a huge smile on your face and lifted your spirits. Well that suggests that you're happy with who you are but you'd be even happier if you could see.
Dianne: It was like an innate response. It was like ... It just brought out this warmth and even when I'm seeing the false things and that didn't mean anything when they were just doing in the testing in the lab. I felt warm seeing these spots of light. I don't know whether your brain responds in that way, in a positive way to seeing that, that side, and I don't know if it's because I’ve had sight before. I don't know but it really did make me feel so wonderful to be able to see.
Here now, I can see no one in front of me. All I've got is these swirls in front of my eyes. I can see some lights up in the roof up there, but if I could maybe see some movement or stuff like that it will connect me to what I see. Still, like I said, it's not that we need that cure to make me normal. It's to, I suppose, make life better. It's like having a guard dog. A guard dog makes my life better. I love having my guard dog and I can take my dog everywhere because I’m so …
Jon: Bernadette and Trevor were telling us how the respective languages of the law and medicine occasionally combine, sometimes clash and they're different dialects in a way and you come from the discipline of community development from the social working side of things. Do you see disability through the prism of your training through the discipline of community development and community work?
Dianne: I do. At three community development, I see that we're all connected. I see that diversity in community is something that we should embrace and really it makes us a better society even when we've got diversity. Yeah, I'll just say that holistic way of seeing is as something together and not that individual society where we need to compete against one another. That's where I ... That's the foundation of the way I look at things.
Jon: There's another language?
Jon: As we have a multi-lingual conversation, it's what it’s turning into. Thank you very much Dianne and thank you also. Thank you also for allowing me somewhat gingerly I might say to touch your temple where you allowed me to feel the wire behind your left eye. It was almost science fiction to be given permission to do that. Thank you. That was very brave of you. It's quite a party trick I might say, ladies and gentlemen.
Our final speaker before we get to the panellists speaking to each and then I'll invite your contributions from the floor is Helen Herrman, who's the Director of Orygen, the mental health service that's now so widely respected and indeed being, I can tell you, replicated and copied all around the world. Helen's just come back from overseas. She's now the global boss of one of the big psychiatric and mental health umbrella bodies and she's very busy. We're very lucky to have her, thank you Helen.
Helen: Well thank you very much Jon and thanks to the panellists. I'm talking about people within my work living with mental ill health and their families. Listening to the other panellists, we've already heard from [inaudible 00:34:43] some aspects of this but the embrace by the disability community of people with mental ill health has been very important to this group because as we're all aware of it, having mental illness is not apparent to anybody else. It's a problem or a situation for the person living with it and often for their families.
I wanted to talk about some work, in fact, we've done with the World Psychiatric Association that relates to the best way for professionals, families, people with lived experience to work together so that coming from the understanding, its best those of us who don't have the problem ourselves but the understanding is the isolation that comes from living with mental ill health and related disabilities is one of the most profound difficulties of people or most profound challenges that people face so that the reluctance of other people often to become close, to recognize the ... Often the courage, the extraordinary courage of people living with mental ill health to go out and live life like anybody else. It takes a lot of courage for many people.
In the World Psychiatric Association, we developed a task force that included people living with mental ill health and some of the people who represented the organisation of families, of people with this situation. The families certainly represents families who are looking after people living with dementia or children with mental health problems including intellectual disability.
The people living with mental ill health might have any number of a range of conditions. Often they’re not ... People are not accorded the respect that others would expect when they encounter a service or they look for something fairly every day that it’s often the reaction in the community to, ‘not in my backyard’. I don’t want a group of people who have attracted a diagnosis of some form of mental ill health to be living in a community near me. What might happen to my children is kind of vague and new founded fears. They're often sometimes based on a complete misunderstanding of what we mean by mental health, mental ill health.
What we did with the World Psychiatric Association was to create a number of recommendations that were consulted about with people with lived experience and with the family groups from many groups, international and national groups around the world and professional groups. There's quite a consensus about this.
The first recommendation relates to human rights as the basis for interaction and then it goes on to commend on the need for collaboration in working on what are the correct ... What are the best policies? What are the best practices for managing and dealing with the situation of people living with mental ill health? How to engage families? How to involve both the people with lived experience and their families in peer support, in services, in working on anti-stigma campaigns locally with other groups in the community and professionals.
We're educating professionals whether they're in their undergraduate studies or in their further studies and also in research so that the people these community groups are involved in determining one of the important questions and engaged in the practice of the research and monitoring how it's going and how it's interpreted. If you think of the broad topic of nothing about us, without us. I suppose people with thinking about this question of mental health have been pushed to the wall a bit and forced to think this way but we could say that this might have application elsewhere as well.
Jon: Before we get to the rest of the panel and back to floor, Helen a few questions if I may? We've looked at individual issues. We've looked at people who are vision impaired or people who can't hear or whatever it might be and with MS but you're looking at life so one of the issues that we've not addressed is people with multiple disabilities, people who might have a physical as well as a mental, as well as intellectual disability or people who might have a substance abuse problems and so on. We've not even touched on that yet so how prepared are we? How able are we to lock horns with multiple issues when we’re still so shy in coming to grips effectively with even individual issues?
Helen: Well, I think that one of the things that hinders us is that we tend to work in silos so that we've had in the recent past, mental hospital hospitals but though in Victoria, we've moved to the point where we don't have separate large mental hospitals anymore. Still there's an alienation in the mind and in our collective mind.
We still have the situation in our community as well as in just about every place that's being studied with people who lived with a mental disorder died prematurely, on average. That on average, people living with depression or living with schizophrenia lose one or two decades of life on average compared with people without that problem.
As you say, when you think of substance abuse compounded with the mental ill health and physical ill people of people, we have significant problems that we have difficulty bringing together physical health, mental health, disability and housing, we have homelessness as a big problem for many of these people, and the inability to get advice and treatment for all of these problems at once.
Jon: We're really missing Jody's input. She is from the indigenous community. She's also an advocate for deaf people. She also has a strong ambassadorial role on several committees and the like and it would have been invaluable if she'd been able to join us.
Sadly, she's not able to but there's another layer and I've just come back from a month in Darwin, in the northern territory where the indigenous disadvantage is so profound and staring you in the face and there are so many people who are looking for ways of moving it along yet not necessarily having the impact they'd like to have but that's maybe another topic for another forum one day. We could even start all over again.
Let's get the panel working with each other and then I'll invite your contributions from the floor. I'll be as democratic as I possibly can be in the best Donald Trump tradition. I'll simply make notes as I see you waving to me a bit like an auctioneer on Saturday afternoon around the corner when you all turn out to see what happens and I'll just call you as I can, as best as I can and invite you to make your contribution.
I think we’ve got a roving microphone which will pop up, yes. We’ve got a couple of them. Wave to me and then I'll try and get the microphone to you in time. Let's start back with you, Graeme and get the panellists chatting to each other.
Do you acknowledge that sometimes people create their own barriers? As Anne was saying before, do you acknowledge that it's not just societal barriers, it's not just technological barriers and the like but sometimes maybe the community of people with disabilities, create barriers for themselves too.
Graeme: Yes I do acknowledge that and that's why I'm such a strong believer in peer support. I've been an active member since I was young of Blind Citizens Australia because I think it's very important for people who are blind or vision impaired to share their experiences, learn from each other about the fact that this is not a problem that just ... Not a problem. This is not an issue that you just you have but it's an issue that many people face.
Well, that’s how I dealt with that one, maybe you can try that. I think people do create their own barrier sometimes and one of the ways to address that is through that sort of peer support.
Jon: Dianne, somehow you maintain and now over decades an extraordinarily positive outcome despite telling us about the barriers and despite the issues and the hurdles. How crucial is all of that in telling your story, in developing the narrative that is part and parcel of the tale?
Dianne: It doesn't mean that I haven't experienced negative things. I'm just lucky and determined. You just soldier on. I don't know I just ... it’s normal. I think everybody, we got to understand that it not just people with disabilities that feel crushed at times. There’s life events that are negative for everyone and I think you’ve got to give yourself time to say, "Okay, well that hasn't worked. Let's get up and try something else."
That’s my personality, [inaudible 00:45:10] like that. I look at the positive as you say. I looked at the influence that I’m giving or passing on to my students. My students especially the face to face ones, I always ask at the end of the trimester, "What is it that you thought when you saw me walk into the classroom?" They're brave enough to say, "We didn't think you could teach us."
Then another one said last time, "Well, we didn't think you could mark our papers." I said, "Well, what do you think now?" They said, "We're wrong." That to me is so important to be sending social workers out with that frame of mind with that education that I'm passing along to them. To know that disability doesn't mean that you need to look at what isn't, it's just a different way of doing things, so yeah.
Jon: Richard, you hinted that wanting to talk about this so I'm going to give you the Dorothy Dixer, the randomness, the fortuitousness of getting access to cutting-edge treatment and technology. It's so unfair that one person may get the benefit of a medical breakthrough and someone else will miss out. How do you grapple with that when you're in the position of making decisions as a clinician on who does or doesn’t get the latest gadget or the latest toy?
Richard: Well I think that we're pretty fortunate in Australia that funding is reasonably good for our treatment and so we're not making decisions about who gets it and who doesn't. The thing that is significant in the hearing loss disability is that people born before a certain time didn’t ... The technology wasn’t around, even the good hearing aid technology wasn't around let alone cochlear implants. They can’t go back and have a childhood with that opportunity and that's where I find it a little bit difficult to grip.
Jon: Okay I'll be the complete savage mongrel, I have a bit of a reputation for being and I'll put it in much blunter terms.
Jon: I don't know what a cochlear implant costs but each one would consume the money needed to avoid childhood deafness in probably scores of aboriginal kids in remote communities who have chronic ear infections and whose life outcomes are absolutely dictated by the fact that their ear infections aren't treated in infancy. How's that fair?
Graeme: It's not fair and things are much worse in countries other than Australia. I think that we ... One of the professors I work with is running a program on this indigenous or particularly for the indigenous groups in Northern Territory in Queensland, Western Australia for ear infection. This is not a simple problem at all and there is some funding going into it.
We do at least okay on that area as well in Australia but in other countries, I mean a cochlear implant is just something for the rich families and not for the poor families in China or in India or in places like this. It's very unfair and the only ... Dare I say it, the only answer to that I think is to keep the world developing and the economies of these places developing and things come with that development but many places are long way behind Australia in terms of this sort of funding for cochlear implants or the other medical breakthroughs.
Jon: Let's not pretend Helen, the world of medical politics and health care funding allocation is as brutal a contact sport as that's played anywhere in the world. Let's not be naive or namby-pamby about this. These are people playing for keeps, surely.
Helen: Yes, that's right. It's a game of winners and losers and if you're living in rural China, your epileptic seizures are unlikely to be treated. If you're a child in a remote part of the Philippine Islands and have epilepsy, you will not get an education. I've seen some beautiful young girls who had .. one was brought by her mother to an outpost of mental health care when the psychiatrists arrived, but she hadn’t been to school for years and was helping in her mother’s clothing store. You’re right, there are some conditions for which there is a lot of funding and a lot of help. That might include nowadays HIV, AIDS and malaria and polio.
However, for the non-communicable diseases and for the disabilities that relate to them, to many other disabilities, there’s very little support. I think the role of public health approach is the most important, that we look at the things that we can do as a community to improve health, including mental health, as well as individual approaches to treatment.
Jon: Then the cost of MS medication, and the subsidy to some of the biggest multi-national pharmaceutical companies in the world for developing things that are of completely unknown efficacy and really all sorts of questionable outcomes. There’s another whole Pandora’s box. Do we open that one up tonight?
Anne: I don’t think I should talk about MS medications with Trevor Kilpatrick in the front row of the audience. I was shocked when I first started my MS medication and I looked at the cost on the box, of what it cost.
Jon: What was it?
Anne: I don’t remember now because I’m not on any medication at the moment, so it doesn’t cost anything.
Jon: Someone dear to me …
Anne: It was like several thousand dollars a month or something …
Jon: Someone dear to me is on $30,000 a year’s worth.
Anne: That’s probably reasonable, I think that’s true.
Jon: Paid for by the public.
Anne: Yeah. I think this is another conversation, about pharmaceutical industry and PBS funding in this country. We could extend that to what’s going to happen under the TPPs that we’ve just … What’s going to happen under the new trade practices agreement. This is a whole other conversation I think.
Jon: There’s a third forum and then we’re going to have a fourth one on the NDIS.
Anne: Yeah. I think the whole issue of funding of medications, and breakthrough medications, is a real … Can our country afford to keep paying these kind of high prices for new drugs? What’s their marginal benefit over what we already have? I think those are serious questions that we do need to ask.
Perhaps, as a public health person, rather than a person experiencing a condition, I would want to see more money going into primary care and public health and prevention.
Jon: On a value’s equation, it’s absolutely part of this conversation about what actually is the point of the medication, if indeed, I’m not just talking about MS here, whether you’re talking about cochlear implants, if there’s nothing disadvantageous about deaf culture, then what are we doing in investing huge amounts of money to get away from it? So on and so forth. If you want to look at it in that context, is that not part of the value’s equation that we’re juggling with tonight?
Helen: Yeah. I think that’s a bit of an either/or kind of simplistic representation of that, I would say. I’m talking from my own experience now. I guess, some symptoms are livable with, and some symptoms are really hard to live with.
I’ll tell you the ones that are the hardest, and I would do anything to get rid of them is fatigue and vertigo. They make you feel crap. Until you’ve experienced that, I think if you did experience that … They are so debilitating. They are so debilitating. Whereas not being … The mobility part of it, I could adjust to, but the actual vertigo, in particular, and the fatigue … If any drug could make my quality of life better, I would’ve put my house on the market, seriously, because until you’ve experienced that, you won’t know what it’s like.
Those are invisible symptoms. That raises another question about disability which is the issue of … Whenever I go to disability conferences, this is something I often get quite worried about, is that we don’t talk about fatigue. We don’t talk about pain, as much as we could. Those are very disabling experiences.
Jon: Anyone who’s been in that situation knows the accusatory looks when you’re using a disabled parking spot, but you don’t have calipers, or a dog, or whatever else it might be. People look at you as if you’re scamming the whole thing. I think many people in the room are nodding their head in silent recognition there.
Before I go to the floor, anyone else on the panel wanting to jump in? I can’t believe Graeme’s been quiet for as long as he has, it’s uncharacteristic.
Graeme: I was just politely waiting to answer a question. No, I don’t have ... I think there are some real challenges here, around the impact of disability. I suppose I would make the distinction, between the impact of the disability, and there is an impact of most disabilities, and that’s one thing with which people with disabilities have to deal.
The other thing, which is added to it, is the impact of the barriers which society puts up. If there were no barriers for me, I still wouldn’t be able to move around as easily as everyone else, or look at the face of my wife and daughter. My disability is going to have an impact. But I would be able to communicate as easily as everyone else; I would be able to navigate my environment more easily, because it would be more logical and more barrier free.
It’s a tricky nuance, but I think that’s the nuance that we have to think about in the context of that question.
Jon: Anyone else on the panel? Dianne.
Dianne: Can I ask Graeme, in the years … I don’t know how old you are … Fifteen ? My experience is that public attitude has got better. I was diagnosed thirty odd years ago, and it was just … I don’t know if it was me as well, it probably was because I wasn’t as confident as what I am now, but I find that people in the street are much better and will help you as much as they can.
Whereas, like I say, before, I remember when I was first diagnosed, walking out of the supermarket and I had the trolley, and I suppose the people didn’t know that I couldn’t see properly. I could hear those people across the road, and I thought “Okay, it’s because I’m taking the supermarket trolley home, which I wasn’t supposed to.” I’m taking it across the road, I’m thinking “I haven’t got …” I just clipped this lady. She turned around and she said, “Watch out. Can’t you see where you’re going?” I went “No,” and I just howled.
Like I say, but I do think people are getting better. The resistance that I’ve had more so, which I think is getting better too, is when you try and get into normal roles. That’s where I think, because you’re not seen as a normal person, and there’s resistance. Everywhere I’ve gone, there’s been resistance for me; because I’ve got it in my head that I am normal. I suppose that’s the stubbornness in me. I don’t know what anyone else on the [inaudible 00:58:16] has thought about that?
Graeme: I don’t think that … I think that attitudes have improved, but only in relative terms. I think we’ve still got a long way to go. I could name five occasions today, where someone has made a limiting assumption about me, as a result of my disability. Most of those assumptions have been wrong.
I’m just talking about little things which don’t impact on my day much, but the people who tell me that I can’t wait where I’m waiting because I’m within 30 centimetres of a counter which has hot drinks on it. Now that actually occurred to me today. I knew that the counter had hot drinks on it, because I heard the people picking up the coffee orders. The assumption is, I’m not allowed to stand there. They want me to go sit on the stool somewhere else.
Look, there’s been improvement. The trend’s in the right direction, but I think we’ve got a long way to go.
Jon: Anyone else on the panel, before we go to the floor? Last orders.
Anne: I just had one thing that’s been going through my mind, and I meant to say. It was in relation to my earlier conversation about cure and accommodate. It was about my child. When he was diagnosed with autism, and at that stage … It’s quite a while ago now, he’s nearly 14. Everyone was saying to us, the best and only treatment that’s ever been shown is ABA, applied behavioural analysis.
Which is forty hours a week, that you’re meant to spend bucket loads of money. Back then, $40,000 a year, probably now more like $100,000 a year, to just have these people work with your kids. Basically, it’s about training these kids to behave more like mainstream society.
We looked into that and we looked into a variety of other things. It really just rankled me, that particular type of therapy, because I didn’t want to have to make my child be like everyone else.
Then I did a little bit more digging, and discovered that the guy that was the first proponent of this, was actually someone who had also created aversion therapy for homosexuals. Then I knew he was the wrong one, because he’d have to treat both of us, and that wouldn’t good. I knew that we were not ideologically, or philosophically aligned.
Jon: It’s actually a really interesting lateral step to compare to, and there’s some more to be made maybe. Let’s see how we go. I did invite people from the floor, so let’s get to it. First up, yes, in the middle hear.
Jon: Just go ahead.
Cassandra: I’m Cassandra Preak, I’m the incoming disabilities officer for the University of Melbourne, along with Alston, who’s next to me. I have a question for Anne. In recent years, there’s been a lot of media attention about anti-vaccination people claiming that vaccines can cause autism. What most people have focused on, is that, that’s an outrageous claim. Whereas, what I’ve focused on is the fact that these people are claiming that having a life threatening condition like polio, is worse than being neuro-divergent.
I just wondered how you felt about that, and about things like prenatal screening for certain developmental disabilities, and so on.
Anne: That’s a nice easy question for me. Let me just make sure … This is a good way to always not quite answer the question on time. I’ve just got to make sure that I understand the question.
The question is about the anti-vaccinator crew saying we shouldn’t … That vaccination’s linked to autism, which I think you and I agree the evidence doesn’t suggest. Yeah? Okay, so we are on the same page with that. The second point to that was though, that it signalled that it wasn’t okay to be neuro-divergent. Is that what your comment was?
Anne: Yeah, and what do I think of prenatal screening? It’s an interesting question. I’ve always, even before I had a child with a disability, I was not comfortable having prenatal screening. Having said that, I did have it because everyone was having it, but I knew, “What in the hell would I do if that came back wrong?” Because I knew I wouldn’t have wanted to go ahead with a termination, but my partner would’ve; so that’s a complicated one. I don’t know that we’d make that same decision now.
I personally think we haven’t thought through this, as a society, very well. About prenatal screening. I think the gene is … We did it. We now only screen for a certain number of conditions. It could be an expanding number of conditions as we find out more, but we haven’t had the conversation; and it is, I think, about … It does reflect our acceptance of diversity. The fact that we are …
I don’t have the answer. I’m not an ethicist. I’m not a philosopher. I’m a person struggling, like everyone else, with these real issues.
I guess the other thing … That my comment is that, and I’m hoping the NDIS will solve all, but, really what’s happened with children with disabilities, is that it’s moved from a state, by an institutionalized system, which was terrible and we all wanted to get rid of it, to a responsibility of the family, and there’s not the lack of community support out there to actually enable what we would think was a good life for children, for any child. Certainly, that’s my experience. There’s so much that needs to happen.
Jon: Anyone else on the panel want to jump in? No? There you are, there’s our fifth forum for follow up, on the pre-natal screening. We’ve got a whole year’s program laid out in front of us …
Anne: Do you have any comments?
Jon: No, no. We’ll move on. Gentleman on the aisle. Please go ahead.
Max: Thank you Jon. My name’s Max Jackson and I’ve marked my fiftieth year in disability this year. I’m a former special education teacher, and also chief executive officer of Kew Cottages. I must admit that I’m a little bit disappointed that no one on the panel, apart from Anne who’s made reference to her son, that there’s been any discussion about intellectual disability.
I want to put a proposition to Graeme, and seek your comment. I want to take the second part of tonight’s agenda, which is the accommodate section. I propose that, to really accommodate disability, whatever form it comes in, we need leadership in the field.
I put it to you, that we currently lack leadership. Certainly in Victoria. Despite having a number of watchdogs, including the disabilities services commissioner, the department of health and human services, the public advocate and others, we’re not seeing the leadership, in actually taking action, on the failure of people to receive their rights.
I’ve been battling a case for eighteen months. It’s gone through the department, the disabilities services commissioner, the public advocate, the ombudsmen, the Victorian Inspectorate. No one will admit that a staff member of department, who threatened to evict a client from her twenty-year placement, and admitted that she’d done nothing to deserve that notice to evict, none of them admitted that that guy had breached the disability act, in terms of issuing that threat, and therefore creating abuse.
I want to ask you Graeme, where do you see the leadership, in terms of changing attitudes, and therefore accommodating disability, standing at the moment?
Jon: Thank you.
Graeme: I can only comment on that question in the broad, rather than on the specific instance that you’ve referred to. I actually think we do have leadership in this area; amongst disability activist communities and advocacy communities.
I think that those communities, and I’ve been a part of that over the years, are not listened to when they should. I instance the situation where Peter Singer was expounding his views on Q&A, about six weeks ago, with regard to people with disabilities. Was there a person on the panel to put the alternative view? No there wasn’t. I think we have a problem in that respect.
I actually think we have good complaint systems. They’re not perfect, because no system is, but I do think we have good complaint systems. We need to ensure that they remain that way. I think we’ve got good leadership in the advocacy space. I think the trends going in the wrong, I mean the right direction, but I think we’ve still got some way to go.
Jon: Why do you think that there’d be strong leadership in disability, when the country is suffering from a lack of leadership in every other regard, Max?
Graeme: I should’ve answered in relative terms, shouldn’t I Jon, because that’s absolutely right.
Jon: We have a crisis of leadership in this nation at the moment, of every kind, at every level.
Graeme: I agree with that.
Jon: Sorry. I work for the ABC. I’m not allowed to say things like that. Okay. In the middle please.
Letitia: I think my question has already partially been answered. I was going to ask toward Richard Dowell, about the medical model, where-by … My name’s Letitia Keeley, and I’m a parent of a child with Down Syndrome. There’s a great push toward the medical model of being able to prevent Down Syndrome, through prenatal testing, running alongside the great triumphs, that people with Down Syndrome are achieving with great therapies, and mostly higher expectations.
We’re having higher expectations for our children and they’re achieving so much more. It’s never been a better time to have Down Syndrome. Yet, it’s becoming rarer and rarer for them to be born in the first place, due to the advances in technology and the medical model. I just wanted a comment on that maybe.
Jon: From anyone in particular?
Letitia: Mainly from, I think Richard Dowell was talking about the medical model, and being involved in the medical model, but also …
Jon: Okay. No, that’s fine. Thank you. Richard?
Richard: Look, I don’t know so much about your area, but I know that there’s been advances in … Again, it comes down, in many cases of this type, to the earlier intervention. That’s a little bit similar to hearing loss, where we can make the difference if it’s very, very early intervention. I think it’s the same in Down Syndrome. Would you agree?
Letitia: [inaudible 01:09:34].
Jon: Yes, that’s right.
Richard: That’s the other forum that’s going to run on prenatal.
Jon: That’ll be next October.
Richard: There are other reasons why there are less, say, deaf babies being born as well. Because of the increase in genetics knowledge and in other areas. It’s not just prenatal screening that’s relevant there, but I think the medical model gets a bad rap sometimes. Sometimes because it often takes longer to get to the outcome that you desire. People have hopes, but …
Graeme Clark, who’s well known as the founder of the cochlear implant work, he devoted his whole 45year career to that one idea. People had the idea of a cochlear implant in the year I was born, 1957. It took a long time.
Dianne is an example in the vision science area, where we know that this is a harder nut to crack, but people are going to work at this from all sorts of angles. It may be 20, it may be 50 years, but they’ll probably get there. On the way, the volunteers will have to be coming in to help that out.
I’m not sure I’m answering your question, but it’s good to hear from another area, where the medical model, getting the evidence and then applying that evidence, has had an effect.
Helen: Yes, thanks Jon. This is a slight tangent, but listening to the questioner and to Anne and to others, I think we’ve got a seventh new seminar, or panel on the families of people looking after, particularly children with intellectual disability or other problems, that the isolation of the care-givers. At the other end of life, the isolation of daughters-in-law or spouses looking after people with dementia.
Jon: Huge issues, so many of them. Gentleman right over on the far side.
Scott: Good evening, thank you all of the speakers for your advocacy on disability issues …
Jon: Just prop the mic up right near your mouth please.
Scott: My name is Scott Avery. I’m from an indigenous people’s organization. I’m also profoundly deaf and have a cochlear implant; so there’s a lot of discussions [inaudible 01:12:07] that.
My general question is, first a reaction and then a question to, perhaps Mr. Innes might take this up, about the place of disabled peoples in Australian society. I think it’s framed by how this debate is structured. It says cure or accommodate. For me, I see that there’s this inference there, that there’s something wrong with people with disabilities. That we need to either fix them or tolerate them.
Could I suggest that there’s another way, where disability is seen as a normal part of the social fabric of society. It’s actually quite normalized. If you had, by example, my cochlear implant, is a piece of technology that I use to provide economic and social value to this country. Much as say, a pilot might use technology and planes and tarmac to provide his economic value.
My question is, is that kind of vision feasible for Australian society, for a place with people’s disability? If so, how do we push the mindset towards that; that we’re not seen as deficits and a burden?
Jon: Ah, the B word. The burden word, Graeme.
Graeme: I think the vision is absolutely feasible. The questioner before you, who asked about Down Syndrome, talked about raising expectations. I meant to comment on that and didn’t. I think that’s one of the things we have to do. We have to raise the expectations.
I talk constantly about the soft bigotry of low expectations, which we as people with disabilities experience. I share your vision, and in that sense, share your view about perhaps, the interpretation of the topic, to either cure or tolerate. I think disability needs to be regarded as part of the fabric of society. I think we can do that, but we have to change attitudes.
I think part of the fault here, not the whole fault, but part of the fault lies with the disability sector. We spend a lot of time talking to each other, whereas I think we ought to be talking more to the broader community. That’s one of the reasons that I’ve taken up, as part of my work, since leaving the commission, this whole work of changing community attitudes towards people with disabilities.
Jon: Thank you Graeme. Woman in the red top.
Dianne: Can I just add to that?
Dianne: I think that forums, like we’ve got tonight, adds to education. Getting opinions … I’m hoping that everyone out there is looking at us and thinking, well, we’re pretty normal. Well, maybe we’re not. I think the education needs to be out there. It’s wrong.
When I first lost my eyesight, I thought that people would come and help me. I soon learned that I had to get out there and help myself, and prove to people that I could do things, because I was just left otherwise, and not seeing made it worse, because you couldn’t see you was around you. I think we need some, I suppose, ambassadors. Some people to get out there and start changing some attitudes.as well.
Jon: I’ve already got 6 people on my list. Now there’s a 7th and we’ve only have about 5 minutes left, so I’m afraid we’re not going to get to everybody’s questions. The woman at the back there.
Susan: Thanks for making the time. My name’s Susan and I work in the Arts and Community Development. I guess I just have this question for you Graeme. I saw you, I think it was you, a few years ago, on Australian Story. You described the way you knew when your wife walked in the room, because you could feel the space move around her. I just think that that is such a profound knowledge that you have, because you are blind; and that if you weren’t blind, the world wouldn’t have that knowledge.
I guess my question is in regards to a cure, who defines the aim of a cure, and do you think that our understanding of a cure is affected by a western approach to a homogeneous humanity, that doesn’t value the diversity of the full spectrum of people?
Jon: Wow. Beautifully said. Thank you.
Graeme: Firstly, thank you for your comment. I don’t remember that conversation, but I know what you’re talking about. I’m aware of the concept that you’re describing, and that’s right. I think that’s a very interesting question, and I don’t think I have the time or the capacity to answer it tonight.
I think that cure, is a word carrying a lot of intent; built into our view, our negative and limited view, of disability. I think that you’re right. That as a society, we need to be far more embracing of difference, and aware of people’s strengths and attributes, and what we bring to the table. Whether we’re people with disabilities or not.
Jon: Okay. On the aisle.
Louise: Hi, my name’s Louise. I’ve found, as being someone with epilepsy, people are so scared of the ‘what if’s’. They find it hard to recognize the ability. I’m just wondering, how do we break down the barriers, when you share your condition with people, such as an employer? That’s for people with either an intellectual disability, a medical disability or a mental health condition.
Jon: Was that a question for Anne?
Anne: You want me to talk about, how do we share it? If you do have a, so called, less visible disability, it does raise the question, of actually not having to share it, which many other people with disabilities don’t have that option. I’ve thought a lot about … It was pretty easy for me to talk about my MS actually, because I think where I was, and I’d been sick. I don’t know how I would feel about epilepsy.
I know that … Now I didn’t tell you this in my story. I have had quite a few periods of depression in my life. Do I talk about those? There’s the stigmatized, and there’s the less stigmatized. I think it’s complicated. I don’t know where epilepsy fits in that, because I haven’t experienced it. Probably somewhere between MS and mental illness.
I think it’s really complicated. I also think it depends on where you are. If you’re coming out of school and you’re trying to get your first job, do you really want to tell someone that you’ve got a problem, if you don’t have to. I think it’s really hard. Some of my activist friends would say, “Well, you’ve got the choice, that’s really outrageous, you’re being ablest by even contemplating that you might tell someone.” I don’t know.
Jon: Another forum in that one perhaps. Last question, right at the very, very back. Go ahead.
Annabelle: My name’s Annabelle. I’m a graduate occupational therapist. We spoke a little bit earlier about the changes that came with LGBTI rights. I wanted to just ask, particularly Dianne, I think, as a teacher and a social worker, whether she saw there being a public education sector within the disabilities space similar to what we saw with the program, that didn’t quite succeed in the way that we hoped, but the safe schools program?
If disabilities might, in the future, have an opportunity to open those conversations very early in life, and have, as part of our curriculum, a better understanding of a world that’s less segregated?
Jon: Okay. Good question for Dianne to end up.
Dianne: I actually like the fact that I’m teaching in social work, and not specifically disability. I think that bridges a gap between, teaching disability, teaching what the class would get normally, but with a person who has a disability, or perceived disability. I think, in whatever conversations we can have, and in whatever education we can have. Yes, I think it needs to start younger.
I’ve got 2 grandchildren. The 3 year old, it’s taken her a little while to understand that I can’t see. I just cover my eyes up to say, Nanny can’t see. Now she’s grabbing my hand, taking me here, taking me there. It’s becoming normal to her now. I think if we do get in early, I think, it’s a good place to start to, again, normalize. Not think of other people as the other. Does that answer your question?
Jon: I hope so, because we’ve run out of time. Any final words from the panel? Anyone desperately on the panel wanting to just make a final point? No? That’s fabulous.
It’s been an extraordinary session. I’ve learned an enormous amount by hearing from each of our panellists, and each of those of you, who have been bold enough to ask questions. We’ve learned that there’s a hierarchy of stigma for instance. There’s another topic. We’ve got a whole year of follow ups possible, from things that have been raised today.
My final word to you is that, fundamentally, whatever else we’re covering, what’s vital is to tell the story. If instead, people just keep to themselves their particular issues or, what we’ve learned from the exchange today, is how vital it is to compare stories, to tell your story, to share it with other people. Everyone learns from everybody else’s perspective, as well as their experience. That’s what this is about.
It takes us back to where it started which is to salute the academy. To salute the university. Particularly our hosts, who I’ll now invite to come back and thank you, for having the courage to at least get the stories told. That’s what tonight’s about as much as anything else.
I invite Trevor and Bernadette to come back, and to formerly thank the panel. Thank you.
Bernadette: We just want to say a few quick thank yous. All of you taking part on the panel, you just, really raised our awareness, our understanding, and I think we have found a third way, as Scott Avery has suggested. Would you please join me in thanking all of these wonderful people, experts by experience, on the panel.
Thank you to everyone who has been tweeting. There’s been another conversation going on for those who can use social media, so we really appreciate that, and please spread the word.
We now have, I think ten topics, to go back to Melbourne Uni, to ask the Vice-Chancellor, would he kindly fund them for us. That would be great. You can tweet him. For those of you on social media, that would be great. Would you please join me in, thanking Jon Faine, Provocateur.
We’d also like to thank all of the volunteers, who have been helping behind the scenes. It takes quite a lot to put something like this together. There’s one person in particular that we would like to thank.
Trevor: That’s of course, Amy Bugeja. We’d also like to thank our sign interpreters. Also the State Library of Victoria, for providing the forum tonight. Amy, would you like to come up, because this wouldn’t have happened without you.
Until the next event. Thank you very much.