Jenny Sealey: 'Big glasses, big tits, big shoes and I'm balanced', Children's Media Conference (CMC) - 2015

Due to prviacy settings, this video won't play outside of Vimeo. You can view it here.

2 July 2015, Crucible Theatre, Sheffield, United Kingdom

Edie Mayhew and Anne Tudor: "Dementia has actually strengthened our relationship', Let's Talk About Sex: Relationships and Intimacy As We Age Conference, Alzheimers Australia - 2016

8 September 2015, Melbourne, Australia

This was a keynote at a conference organised by Alzheimers Australia and COTA Victoria. Edie is now 65 and living with dementia. She was diagnosed in her late 50s. She and Anne have been a couple for many years, and have delivered similar talks around the country. In 2015, they received a volunteers award from the Victorian Department of Health.

LOVE LIFTS US UP …. 

Hi I'm Edie, and this is my partner Anne. Today I'm going to talk about our experience in dealing with a diagnosis of dementia and the impact this dreadful disease has had on our relationship.

I was diagnosed with Younger Onset Dementia, Alzheimer's Disease five years ago this month. I was aged 59 at the time.

The title of our presentation is taken from the Joe Cocker's song “Up Where We Belong”. A few years ago our YOD Art group was asked to choose a song or poem which had personal meaning to create a collage. This was my choice.

Anne noticed worrying signs and changes in me from 2005. I rely on her memory to be able to give you an accurate picture of the last 10 years. She says I started withdrawing to the study after dinner and spent hours at the computer playing computer games. Initially she thought I was doing paperwork for my business as a Driving Instructor but she eventually worked out I was playing Hearts on the computer.

I stopped sitting and relaxing with Anne in the evenings as we'd always done and would only watch sports programs on TV. Previously we'd watch several programs together on Aunty or SBS. I was becoming more and more negative. I didn't particularly want to socialise, especially when there were more than a few people. I told Anne some time later that I couldn't follow group conversations and didn't want to repeat myself.

Anne says I used to get defensive or angry if she tried to talk to me about changes she observed. If she came into the study I used to shut down the computer so she wouldn't see what I was doing. I didn't get away with much, Anne seemed to be able to catch me out all the time!

We had developed strong and healthy communication over our years together. We were both committed to resolving misunderstandings and differences and working through issues which arise in relationships. We had no secrets. We had no need for them. But now I was no longer able to put into words what was going on for me; I didn't want to think about what was going on in my head let alone my life. I didn't tell Anne that I was forgetting where to pick up clients from for their driving lesson and that I was going to the wrong house.

My memory had been one of my strongest assets. My attention to detail and ability to remember dates, addresses etc was well known. We were stopped by a police officer for a licence check one night and I didn't have my driver's licence with me. But when I told the officer my driving licence number, he shook his head and waved us on.

I was progressively cutting off from myself, my thoughts, my feelings and Anne. In addition to increasingly disengaging, I was becoming more forgetful, easily frustrated, lethargic, defensive and negative, particularly at night. I'd get angry with Anne sometimes and stomp out of our bed into another room. I'd accuse her of saying and doing things I'd thought she'd said or done. Of course I'd forget about moving beds and getting angry and would make excuses about not wanting to spoil her nights sleep. I was in a bad place.

Fortunately I don't have any memory of this time, because if I did I'm certain it would have been the most depressing, frightening and isolated time of my life. Apparently we'd arrange to meet for lunch and I wouldn't turn up and I'd forget about arrangements which had been made to catch up with friends. Remembering events and dates and organising myself was becoming more and more difficult. I was increasingly leaving more to Anne to arrange holidays, shop, cook, and clean.

We went on safari to the Kruger National Park in 2007, and to Vienna, Prague, Croatia and Norway in 2008. Unlike all previous travel, I didn't get involved in any of the organising, despite Anne's attempts to engage me in the process. I was very keen to travel of course, as we had travelled far and wide over the years. Twice at airports during this period when Anne went to the toilet, I went off looking for her and she found me wandering in a distressed state. I stopped contacting friends and initiating outings. I was leaving for work earlier and earlier.

Neither of us handled this period of our lives before diagnosis very well. I was blocking out everything and everyone, refusing to admit there was a problem and unwilling to share my fears, vulnerability and grief.

Anne was getting increasingly concerned, frustrated and impatient with me.

We were in unchartered waters withdrawing from each other as a way of trying to manage the situation. It was the worst time of our lives. When I was having a knee replacement in 2008, our bank rang and told Anne we were two months behind in credit card payments and that a third payment was almost due. I had always been an exemplary bookkeeper and financial manager and Anne had left all financial matters in my capable hands. But when she found a mountain of unattended bills and a very late BAS statement she reluctantly inherited my role. I used to sit at the desk with those stupid, unpaid bills every weeknight and yet still managed to ignore them. When I think about that now, that was quite an achievement!

I had many serious falls from 2006-2009. The last one was when we away with family and I tripped, fell and shattered my patella. Fortunately the knee replacement I'd had four months earlier wasn't damaged. After it was wired we went on a planned holiday to North Queensland with friends. Although all this unfathomable stuff was going on and I was in a full leg brace and totally dependent for six weeks, we never at any point actually gave up on life or stopped wanting to be together. Although we were both depressed at the time, we are so grateful that in our darkest times, and there were many, our love for each other, though truly tested, remained steadfast and enabled each of us to go on.

Anne persisted in trying to get me to see our GP for two years. I finally agreed early in 2009. When I came home Anne asked me what the doctor said and I told her she said there was nothing wrong. I don't even know whether I actually went to see the GP, or if I did whether I'd forgotten to tell her why I was there. Anne insisted we'd go back together. My memory problems were finally getting addressed and I could start to believe that maybe we could get through this terrible time. I underwent a comprehensive neuropsychological assessment over several weeks followed by appointments with other specialists. We now attended all appointments together and I was no longer feeling frightened or isolated. Our open and honest communication returned.

Anne had already decided in 2009 that she needed to either work at home or retire. She was concerned about safety issues so I came up with a master-plan to create a separate entrance, hallway and toilet at the rear of the house and convert the study into a practice room. It enabled Anne to continue to work for a further 3 ½ years in an environment which worked really well for everyone. I now knew that I still had something to offer and I was wanting to take some pressure off Anne. I was no longer disengaged. After the neuropsychological review in mid 2010 the neuropsychologist wanted to come to our home to give us the feedback. He said that significant deterioration had occurred in the 12 months, particularly in new learning and memory and indicated the likelihood of Alzheimer's.

We sat silently in the lounge room for a long time after he left, feeling appreciative for the thoughtful, caring way we were informed but numbed by the news as well. Eventually we stood up and cried in each other's arms for a long time. The silent presence in the room was the previous experience we had with Alzheimer's; Anne's mother had died in 2005 after living with Alzheimer's for more than 20 years. We had moved from Melbourne 23 years earlier to assist her father in her care and Anne became her primary carer after her father died in 2002.

We knew a great deal about dementia. The thought of Anne having to face this dreaded disease again had paralysed me and it was the main reason I shut down for so long and had so much difficulty in facing the situation and talking to Anne about it. My motto must have been “If a thought is unbearable, it's best not to think it and it'll go away”. It didn't work, because my denial and avoidance made our lives much more difficult than they needed to be.

Anne says having a partner with dementia is a very different experience to having a parent with dementia. I must have felt guilty that I was going to be a burden for Anne, I didn't understand at the time that there was nothing for me to feel guilty about, and Anne had to overcome her reluctance to take command of the situation and not leave it to me to make good decisions.

A specialist neuropsychiatrist in Younger Onset Dementia confirmed Alzheimer's in September, 2010 after a PET scan and a review of the earlier MRI. We now knew what we were dealing with; there was relief in that and a growing belief that we could launch ourselves to a better place, in time. It had been more than five years since Anne had first expressed her concerns to me.

The first two years were a maelstrom. I had to retire from the work I loved; we had to sell my car and try to sell the business. There was a succession of new people entering our lives, local, state and federal bureaucracy, financial institutions, lawyers and organisations and agencies which support people with Dementia. The required form filling was unbelievable but thankfully Younger Onset Key Workers assist newly diagnosed families through the process now.

We became actively involved in the Younger Onset Dementia world by participating in the three day Alzheimer's Australia “Living with Memory Loss” program. It was a great experience for us and helped establish a small, local community of care and support with people in a similar position. I joined Alzheimer's Australia Victoria Reference Group and Alzheimer's Australia National Advisory Committee. I'd been on committees throughout my 6 work life. A whole new world was opening up for me again and I was now beginning to feel more positive.

We also commenced major renovations to our home which were completed within two years of my diagnosis. It was stressful and inconvenient, especially when we didn't have a kitchen, and then a bathroom, but it was worth it as it has made our lives simpler, easier and more comfortable. We also have a beautiful garden and a gorgeous 14 year old dog called Shinji.  We have lived where we live for 16 years and we both love our home and its location, and we plan on staying there for as long as possible. 

We'd be the first to acknowledge there are no short-cuts to truly accepting such significant change to our life circumstances, and that we didn't handle things as well in the first couple of years as we do now. Anne told me, I once said to her “I may as well be dead”. I can't imagine ever thinking or saying that now. Good communication between us is a key to where we are today as well as the support of significant others.

We gradually learned to accept then embrace our new reality and the changes that happen along the way. We both had to learn to manage our feelings in these new circumstances. When I was being fractious Anne had to learn not to react. We both had to learn to accept our limitations and not have unreasonable expectations of ourselves or each other. We both had to face the awful grief, terrible sense of loss and fear of the unknown that comes with truly facing a new reality. We had to accept that the future we'd planned, of travel and retirement and long, lazy lunches with friends was not to be. But in facing the truth together it became possible to accept it and this brought with it a serenity and even deeper love and respect. We gradually became more relaxed, contented and good humoured.

For five years now, since diagnosis, we have seen each other grow to a place of acceptance, contentment and peace. It's not devoid of frustration and stress for Anne, I know, but negative feelings soon subside because that's not what we want our lives to be. I used to be so hard on my myself, but I'm not now. We choose to be on the side of life and we are grateful for what we have, and that helps us deal with our reality. 

There is no doubt that dementia is disabling, challenging and life changing, but there is much more to the story than that. I choose not to allow dementia to dictate my thoughts and feelings. I prefer to think about my capacities rather than what I've lost. I have this moment in time and that's enough. And for us, dementia has actually strengthened our relationship, brought us even closer and given us opportunities and experiences we otherwise wouldn't have had.

Love is at the centre of my life now. Peace and calm descended on our household towards the end of 2012 and it continues. Anne retired in June last year and that has made life even better for both of us. We enjoy spending time together, but we also have our structure and routines that gives us time apart.

I so look forward to the end of the day when we're together again.

We have been fortunate to travel to China, Botswana and Vietnam since my diagnosis. We may not travel overseas again, but that really doesn't matter. Dementia forces the end of some things, not all things, but it also opens us up to new things as well. We would like to acknowledge the importance of others in our dementia journey, people we've met through Alzheimer's Australia, Younger Onset Dementia community, couples and individuals who are in the same position as ourselves, and staff who support people with dementia; special family members and friends who stay connected as well as professionals who assist us along the way. We appreciate you and thank you for your help and encouragement.

My relationship with Anne is a very loving, positive and enjoyable partnership. We have known each other for most of our adult lives and been in a relationship for just over 31 years. We've had the most amazing life together. We all know there is so much more to sexuality than sex. We're more playful and appreciative of each other. We embrace, cuddle and hold hands more, although we've always been very tactile. There is more tenderness, thoughtfulness, care and respect. We know we're both wanting to be the best we can for each other. I am always telling Anne, “I love you with all my heart.” I write it on her back in bed at night and on any part I can find during the day. I have never loved her more, nor have I ever felt as loved by her. I don't remember a lot, but I know that the most important thing to me is our deep love for each other. What else could I possibly need?

I can honestly say I have never felt more contented in my life. I don't feel pressure, anger, frustration, fear or regret at all. I don't have bad memories. We are here for each other. We feel blessed. I often find myself looking at Anne and I'm overwhelmed and bursting with feelings of love and gratitude. And I just have to tell her, again and again, how much I love her.

I believe our increased intimacy has enabled both of us to experience deep personal and spiritual growth and healing. Together we are more than two. I describe us as “Team formidable”. Recently Anne and I were having a conversation about the many good things which have happened to us and the many amazing people we have met since dementia has entered our lives. Actually Anne was doing all the talking, about dementia being transformational and giving us opportunities to grow and so on and so forth. And I just said to her, “ Our hearts are bigger ”. After a couple of minutes, Anne closed her mouth, shook her head, and said “Edie, you've just said in four words what I was trying to say in 100. That is the most profound and beautiful thing you have ever said”.

Our wish for everyone here today is, whatever your connection to dementia, We hope it makes your heart bigger too. Thank you.

Anne Tudor and Edie Mayhew

Rob Carlton: 'That's my stick', Wheeler Centre Show & Tell - 2016

17 February 2016, Wheeler Centre, Melbourne, Australia

Tony Wilson hosted a 'Show and Tell for Grown Ups' session at the The Wheeler Centre. The other guests were Sofija Stefanovic and Alison Lester. There will be more Show and Tell for Grown Ups in July 2016.

Tony: It is, ladies and gentlemen, it's a stick.

Rob: If I put it there it blends into the background though, you can't see, it's got a camouflage going on. Maybe... can you see that? Alright. There you are.

Tony: It's a stick.

Rob: It's my stick!

Tony: So, talk us through, ah, a stick.

Rob: So, I was thinking about this, and this stick kinda comes within a story, within a story, I think. And certainly by the end of this, we'll know whether there's a story in it at all.

So that stick, was in my house growing up, it was always part of our lives. My mum and dad were amazing cooks, my dad loved cooking curries, and for as long as I can remember, that stick was in our kitchen, in Bayview, which was my home where you get a real sense of home.

And that stick was used to stir our curries.

And at some point, I think in my teens, I learned that that stick was brought into my family when – before I was born – about 18 months before I was born, when my mum and dad and two older sisters were living in New Zealand and my older brother Richard was born.

And at eight weeks of age, my brother Richard died of cot-death, and my mum and my dad and my sisters walked down to the beach, on a lonely cold, windy day. An Australian family sitting on a beach in New Zealand, trying to gather courage together, and they picked up that stick. And they bought it home. And I learned about that when I was in my teens, and it was always this wonderful thing, it was something that was just there and we always used it and it was part of our life.

And then my mum and dad got a bit older, and as wise parents do, when they start to get older, they divested themselves of all these things that, should they go under a bus, it won't mean anything to anyone else –

[adjusts wilting microphone] Hang on, I'm an old roadie, don't worry about this. Being an actor, you can pretty much do EVERY job...um ...Coffee anyone?

Tony: A long time since you've done those ones though, isn't it?

Rob: (laughs) So, yeah, when older people ... being sensible ... so they gave it to me. It was my stick. 'Cos I was the replacement boy. And so I now got this stick and I then have it my house and I've got twin boys, my eleven year old boys, and I explain to them everything that goes on in my life, and I tell them that this is my stick and this is how we came to get it. And they call it ‘The Stick Of Richard Life’. My little boys call it ‘The Stick Of Richard Life’, so that's the name.

So here's where the story gets into a bit of a different sort of story and it starts to go slightly skewiff. Right. Oh, and don't worry about me, I do get emotional, but trust me, I'm feeling fine ...(laughs)

So we then, in Sydney we do something that's called Story Club, and we sit down and write a sixteen hundred word story and we read it out in a big oversized chair. Now the theme of Story Club this month was 'Sense of impending doom' – write a story about when you had a sense of impending doom.

Now, here's the bizarre thing. I don't have a sense of impending doom. I've never had a sense of impending doom, and it remains one of the great mysteries of my life, how my mum and dad were able to bring me up in a world that was only ever going to shine on me, that was only ever going to give me joy and wonder and happiness if I showed it to the world.

I was never mollycoddled, I never ever got a sense that this world would take me away. And how my mum and dad did that after going through what they went through, remains a mystery.

So, I wrote this story. And I framed my story up with this stick, and talked about the irony of growing up without this impending doom, given everything I should have had should have been fear and worry.

So I write this story, and I read it out and it was good, man! I nailed it. (laughs)

But then, of course, I've gotta tell my mum and dad, and I’ve done this thing, and am I cashing in on the family heartache and grief? ... and then, oh dearie me, I wasn't doing that, I know what I'm like, I was honest and clear in my intent. So I wasn't doing that, but for the first time ever, I felt reticent. A little. To tell my mum and dad about my story that I'd written for fear of the emotions that it would bring up.

And shortly thereafter I came down to Melbourne, and I was having dinner, and I did think to myself, what shall I do in this situation? And so I do what I always do, I arrived and spilled my guts immediately - (laughs), that’s just how I roll.

And so that led to this, um – now we're gonna be here 'til eight o'clock – So I told my mum and dad, this is what I've done. And of course my mum and dad are amazing people, and so emotionally courageous, and transparent and we talked about that, the detail, I'd never really got an understanding of what my dad went through.

My dad’s framing of those horrible days back in New Zealand forty six years ago was always 'it was so much worse for your mum', 'you see, Rob, back then our lives, it was segregated, I would go to work but your mum was at home with the children, and she carried Richard, and she was looking after Richard, and she was with Richard for every hour of every day’, and this was my understanding of that time. And in fact, my story, when I wrote it, it focused on that moment that my sister would tell me, she stills remembers that moment of mum running down the garden path, saying 'He's gone! He's gone!'

And it's a heartbreaking image in my mind, but that was my memory of this time, and I wrote this story. So I have this interesting evening with my mum and dad, and then I go to the theatre just down here, and my older sister, by chance – it's her birthday and she's at the theatre – and she rarely goes to the theatre, and I hadn't organised to be there with her, she was there with her husband and we go and see a show together – it was poor – and we meet in the foyer afterwards, we go to the Curve Bar afterwards, and they say, ‘how are you’ and I say I'm really well, but I've just had this really interesting, incredible night with mum and dad talking about the detail of that day Richard died.’

And I said, ’you know, I'd talked about this, and I'd talked about that and I said about the moment with mum running down the garden path ... and I was just sad ...’

And she said, 'Oh, but Rob, that's not the clearest memory of my day.'

I said, ‘what is it?'

And she said, 'Dad.'

And I'd never heard anything about my Dad's response on that day. I'd only ever heard it through the prism of dad saying 'it was so much worse for your mum', and that was it.

I said, ‘What do you mean?’

Now I may lose it through this bit, again don't worry, I'm brave.

So we're standing in the Curve Bar, having this conversation, and my sister says, 'My most potent memory of that day, when they put Richard in the back of the ambulance – Dad banging on the roof of the ambulance, and howling.'

And she told me that, and I had this emotional punch, it was like a fist jamming into my chest and I literally went [howls] and bent down and started sobbing and sobbing, and I couldn't stand up and I bent down to my knees and it was, I was like a groaning wreck.

I've never felt anything like that in my life. Nothing since, nothing before. And at that moment I felt guilt, and I felt shame. I felt that I hadn't honoured my father's grief, I felt as a son I didn't really know the truth of the most horrific thing in my father's life. And I'd written a story and I honoured my mum and her bravery and courage and optimism.

But, I felt like I'd sold my father out a little bit.

It was an astonishing moment. And being what I am, I needed to kind of try and make a reparation. So, I thought about this and a week or two later I –

Oh and then mum and dad said, ‘Will you show us the story?’ Haah, shit! And it's mad. I mean like, it's an adventure story, it's a road trip story, so, no sense of impending doom, man. And me and my buddy go on a road trip, we hitch-hike, we spend a night with an attempted murderess, there's nudity, there's panel vans, there's you know, a lot of low-level criminality, and I think, but, you can read that mum and dad, but there's also The Stick Of Richard Life stuff.

So I sent it to them and Mum and Dad read it and they ring up and they say, 'Oh, we read your story' and say some nice (things) and dad gets on the phone, and he’s very proper and he says, 'Ooh helloo' – you know I've written plays – and he says, 'I've seen a lot of the things you've done, Rob, but, I've never read your prose, and they're quite beautiful, crisp, not too many long words, very clear, I mean beautifully done, a lovely story, obviously very sad, and I'm sure the people that heard it were crying, but in terms of the quality of the literature, very well done.'

I'm sittin' there thinking, fu-uck.

I said, 'Thanks dad, but I gotta say..', this thing – and I didn't want to talk about that moment [indicates banging on the roof of the ambulance] it was not for me to bring up, that moment -  but I did say, I'd been thinking about this, and I said, ‘You know dad, I really don't feel that I've ever really, I guess, honoured or accepted or talked to you about what you really went through, it's always been through the prism of a family, through the prism of what mum went through and what my sisters, but I never really ...’

And he said 'Oh no, well yes, it was obviously very very difficult, very sad', but – and then boom, like a switch, straight to the dominant story – it was so much worse for your mother, there was nothing really difficult for me, I had to go to work, this is the way it was, it's your mother, it's your mother, it's your mother.

And I didn't test it further, because that is my Dad's story.

Now, two things to come out of this: one, I think it gave me an insight into what it is different members of the family do, and when we come to an experience and we walk away with our own story of it, each member of a family, each member of that experience has their own narrative that they need so that they can keep moving forward in a way that helps everybody get forward. And at that point in time, I truly believe that my dad needed to sublimate the heartache and the pain of what it is to lose his only son, in order for my mum to repair, and my sisters to grow, and for me, should I arrive, to be born into a world that still has hope, and that every time I go to sleep isn't the most frightening time in the world, for a family. Which I think it would have been. So I think that's what my dad had to do, and that's what he clung to, and that was his story.

And then the thing I've been thinking on, in this last month – my dad died on Christmas Eve – it wasn't guilt I felt that day, or shame or sadness, when my sister told me about that image [indicates banging both hands on the roof] and the ambulance. I have a feeling it was an inherited memory.

The feeling was so visceral, it was so strong, it was, I mean, the time was instantaneous, when my sister said this was what your dad did, I hit the deck and I was howling, and I don't know how we as human beings learn, what we learn, what knowledge is innate, what we're born with, what's nature, what's nurture, but it's my feeling that that particular experience that my dad went through forty six years ago, has somehow, through the wonder of procreation found its way somewhere into my heart and body, and my dad's experience rests now with me.

That's my stick.

Rob discusses this speech and salon storytelling generally in episode 17 of the Speakola podcast

Margaret Sanger: 'We claim that woman should have the right over her own body and to say if she shall or if she shall not be a mother', The Morality of Birth Control - 1921

18 November 1921, Park Theatre, New York, USA

The meeting tonight is a postponement of one which was to have taken place at the Town Hall last Sunday evening. It was to be a culmination of a three day conference, two of which were held at the Hotel Plaza, in discussing the Birth Control subject in its various and manifold aspects.

The one issue upon which there seems to be most uncertainty and disagreement exists in the moral side of the subject of Birth Control.  It seemed only natural for us to call together scientists, educators, members of the medical profession and the theologians of all denominations to ask their opinion upon this uncertain and important phase of the controversy. Letters were sent to the most eminent men and women in the world. We asked in this letter, the following questions: 

1. Is over-population a menace to the peace of the world?  

2. Would the legal dissemination of scientific Birth Control information through the medium of clinics by the medical profession be the most logical method of checking the problem of over-population?

3. Would knowledge of Birth Control change the moral attitude of men and women toward the marriage bond or lower the moral standards of the youth of the country?

4. Do you believe that knowledge which enables parents to limit the families will make for human happiness, and raise the moral, social and intellectual standards of population?

We sent such a letter not only to those who, we thought, might agree with us, but we sent it also to our known opponents.  Most of these people answered.  Every one who answered did so with sincerity and courtesy, with the exception of one group whose reply to this important question as demonstrated at the Town Hall last Sunday evening was a disgrace to liberty-loving people, and to all traditions we hold dear in the United States. I believed that the discussion of the moral issue was one which did not solely belong to theologians and to scientists, but belonged to the people. And because I believed that the people of this country may and can discuss this subject with dignity and with intelligence I desired to bring them together, and to discuss it in the open.

When one speaks of moral, one refers to human conduct. This implies action of many kinds, which in turn depends upon the mind and the brain. So that in speaking of morals one must remember that there is a direct connection between morality and brain development. Conduct is said to be action in pursuit of ends, and if this is so, then we must hold the irresponsibility and recklessness in our action is immoral, while responsibility and forethought put into action for the benefit of the individual and the race becomes in the highest sense the finest kind of morality.

We know that every advance that woman has made in the last half century has been made with opposition, all of which has been based upon the grounds of immorality.  When women fought for higher education, it was said that this would cause her to become immoral and she would lose her place in the sanctity of the home.  When women asked for the franchise it was said that this would lower her standard of morals, that it was not fit that she should meet with and mix with the members of the opposite sex, but we notice that there was no objection to her meeting with the same members of the opposite sex when she went to church.

The church has ever opposed the progress of woman on the ground that her freedom would lead to immorality. We ask the church to have more confidence in women. We ask the opponents of this movement to reverse the methods of the church, which aims to keep women moral by keeping them in fear and in ignorance, and to inculcate into them a higher and truer morality based upon knowledge. And ours is the morality of knowledge. If we cannot trust woman with the knowledge of her own body, then I claim that two thousand years of Christian teaching has proved to be a failure.

We stand on the principle that Birth Control should be available to every adult man and woman.  We believe that every adult man and woman should be taught the responsibility and the right use of knowledge.  We claim that woman should have the right over her own body and to say if she shall or if she shall not be a mother, as she sees fit. We further claim that the first right of a child is to be desired. While the second right is that it should be conceived in love, and the third, that it should have a heritage of sound health.

Upon these principles the Birth Control movement in America stands. When it comes to discussing the methods of Birth Control, that is far more difficult.  There are laws in this country which forbid the imparting of practical information to the mothers of the land.  We claim that every mother in this country, either sick or well, has the right to the best, the safest, the most scientific information.  This information should be disseminated directly to the mothers through clinics by members of the medical profession, registered nurses and registered midwives.

Our first step is to have the backing of the medical profession so that our laws may be changed, so that motherhood may be the function of dignity and choice, rather than one of ignorance and chance. Conscious control of offspring is now becoming the ideal and the custom in all civilized countries. Those who oppose it claim that however desirable it may be on economic or social grounds, it may be abused and the morals of the youth of the country may be lowered.  Such people should be reminded that there are two points to be considered.  First, that such control is the inevitable advance in civilization.  Every civilization involves an increasing forethought for others, even for those yet unborn.  The reckless abandonment of the impulse of the moment and the careless regard for the consequences, is not morality. The selfish gratification of temporary desire at the expense of suffering to lives that will come may seem very beautiful to some, but it is not our conception of civilization, or is it our concept of morality.

In the second place, it is not only inevitable, but it is right to control the size of the family for by this control and adjustment we can raise the level and the standards of the human race.  While Nature’s way of reducing her numbers is controlled by disease, famine and war, primitive man has achieved the same results by infanticide, exposure of infants, the abandonment of children, and by abortion.  But such ways of controlling population is no longer possible for us.  We have attained high standards of life, and along the lines of science must we conduct such control.  We must begin farther back and control the beginnings of life.  We must control conception.  This is a better method, it is a more civilized method, for it involves not only greater forethought for others, but finally a higher sanction for the value of life itself.

Society is divided into three groups.  Those intelligent and wealthy members of the upper classes who have obtained knowledge of Birth Control and exercise it in regulating the size of their families.  They have already benefited by this knowledge, and are today considered the most respectable and moral members of the community. They have only children when they desire, and all society points to them as types that should perpetuate their kind.

The second group is equally intelligent and responsible.  They desire to control the size of their families, but are unable to obtain knowledge or to put such available knowledge into practice.

The third are those irresponsible and reckless ones having little regard for the consequence of their acts, or whose religious scruples prevent their exercising control over their numbers.  Many of this group are diseased, feeble-minded, and are of the pauper element dependent entirely upon the normal and fit members of society for their support.  There is no doubt in the minds of all thinking people that the procreation of this group should be stopped. For if they are not able to support and care for themselves, they should certainly not be allowed to bring offspring into this world for others to look after. We do not believe that filling the earth with misery, poverty and disease is moral.  And it is our desire and intention to carry on our crusade until the perpetuation of such conditions has ceased.

We desire to stop at its source the disease, poverty and feeble-mindedness and insanity which exist today, for these lower the standards of civilization and make for race deterioration.  We know that the masses of people are growing wiser and are using their own minds to decide their individual conduct.  The more people of this kind we have, the less immorality shall exist.  For the more responsible people grow, the higher do they and shall they attain real morality.

Glennon Doyle Melton: 'It's braver to be Clark Kent than it is to be Superman', Lessons from the Mental Hospital, TEDx - 2013

uploaded 31 May 2013, TEDx Traverse City, Michigan, 2013

Hi. I have been trying to weasel my way out of being on the stage for weeks. I am doing fine. But about a month ago I was up early panicking about this. And I watched in all of Tech Talk that Brené Brown did on vulnerability. Dr. Brown is one of my heroes. She is a shame researcher and I am a recovering bulimic, alcoholic and drug user. So I’m sort of a shame researcher too. It’s just that most of my work is done out in the field.

And Dr. Brown defined courage like this. She said, “Courage is to tell the story of who you are with your whole heart.” And that got me thinking about another one of my heroes Georgia O’Keeffe and how she said, “Whether you succeed or not is irrelevant. There is no such thing. Making the unknown known is what is important”.

So here I am to tell you the story of who I am with my whole heart and to make some unknowns known.

When I was eight-years-old, I started to feel exposed and I started to feel very very awkward. Every day I was pushed out of my house and into school all oily and fuzzy and conspicuous and to meet the other girls seemed so cool, and together and easy.

And I started to feel like a loser in a world that preferred superheroes. So I made my own capes and I tied them tight around me. My capes were pretending and addiction. But we all have our own superhero capes; don’t we? Perfectionism and overworking, snarkiness and apathy, they’re all superhero capes.

And our capes are what we put over our real selves so that our real tender selves don’t have to be seen and can’t be hurt. Our superhero capes are what we keep us from having to feel much at all, because every good and bad thing is deflected off of them.

And so for 18 years, my capes of addiction and pretending kept me safe and hidden. People think of us addicts as insensitive liars but we don’t start out that way.

We start out as extremely sensitive truth tellers. We feel so much pain and so much love and we sense that the world doesn’t want us to feel that much and doesn’t want to need as much comfort as we need. So we start pretending. We try to pretend like we’re the people that we think we’re supposed to be. We numb and we hide and we pretend and that pretending does eventually turn into a life of lies. But to be fair, we thought we were supposed to be lying.

They tell us since we’re little that when someone asks us how we’re doing, the only appropriate answer is: “Fine. And you?”

But the thing is that people are truth tellers. We are born to make our unknown known. We will find somewhere to do it. So in private, with the booze or the over-shopping or the alcohol or the food, we tell the truth. We say actually I’m not fine. Because we don’t feel safe telling that truth in the real world we make our own little world and that’s addiction. That’s whatever cape you put on.

And so what happens is all of us end up living in these little teeny, controllable, predictable, dark worlds instead of altogether in the big, bright, messy one.

I binged and purged for the first time when I was 8 and I continued every single day for the next 18 years. It seems normal to me but you’re surprised.

Every single time that I got anxious or worried or angry, I thought something was wrong with me. And so I took that nervous energy to the kitchen and I stuffed it all down with food and then I panicked and I purged. And after all of that, I was laid out on the bathing floor and I was so exhausted and so numb that I never had to go back and deal with whatever it was that it made me uncomfortable in the first place. And that’s what I wanted. I did not want to deal with the discomfort and messiness of being a human being.

So when I was a senior in high school, I finally decided to tell the truth in the real world. I walked into my guidance counselor’s office and I said ”actually I’m not fine. Someone help me”. And I was sent to a mental hospital.

And in the mental hospital, for the first time in my life, I found myself in a world that made sense to me. In high school, we had to care about geometry when our hearts were breaking because we were just bullied in the hallway, or no one would sit with us at lunch. And we had to care about ancient Rome when all we really wanted to do was learn how to make and keep a real friend. We had to act tough when we felt scared and we had to act confident when we felt really confused.

Acting — pretending was a matter of survival. High school is kind of like the real-world sometimes. But in the mental hospital, there was no pretending. The zig was up. We had classes about how to express how we really felt through music and art and writing. We had classes about how to be a good listener and how to be brave enough to tell our own story, while being kind enough not to tell anybody else’s. We held each other’s hands sometimes just because we felt like we needed to.

Nobody was ever allowed to be left out. Everybody was worthy. That was the rule just because she existed and so in there, we were brave enough to take off our capes. All I ever needed to now I learned in the mental hospital.

I remember this sandy haired girl who was so beautiful and she told the truth on her arms. And I held her hand one day while she was crying. And I saw that her arms were just sliced up like pre-cut S. In there, people wore their scars on the outside, so you knew where they stood. And they told the truth, so you knew why they stooped in there.

So I graduated from high school and I went on to college, which was way crazier than the mental hospital. In college, I added on the capes of alcoholism and drug use. This Sun rose every day and I started bingeing and purging. And then when the sun set I drank myself stupid. The sunrise is usually people’s signal to get up but it was my signal every day to come down — to come down from the booze and the boys and the drugs and I could not come down. That was to be avoided at all cost. So I hated the sunrise.

I closed the blinds, and I put the pillow over my head when my spinning brain would torture me about the people who were going out into their day into the late to make relationships and pursue their dreams and have a day – and I had no day; I only had night.

And these days, I like to think of hope as that sunrise. It comes out every single day to shine on everybody equally. It comes out to shine on the sinners and the saints and druggists and the cheerleaders. It never withholds; it doesn’t judge. And if you spend your entire life in the dark and then one day just decide to come out, it’ll be there waiting for you — just waiting to warm you.

All those years I thought of that sunrise as searching and accusatory and judgmental. But it wasn’t – it was just hope’s daily invitation to need to come back to life. And I think if you still have a day, if you’re still alive, you’re still invited.

I actually graduated from college which makes me both grateful to and extremely suspicious of my alma mater. And I found myself sort of in the real world and sort of not.

On Mother’s Day, 2002 – I am not good at years – we’ll just say on Mother’s Day, I had spun deeper and deeper. I wasn’t even Glennon anymore. I was just bulimia, I was just alcoholism. I was just a pile of capes. But on Mother’s day — one Mother’s day I found myself on a cold bathroom floor, hung over, shaking and holding a positive pregnancy test.

And as I sat there with my back literally against a wall, shaking and understanding watched over me. And in that moment on the bathroom floor, I understood that even in my state, even lying on the floor that someone out there had deemed me worthy of an invitation to a very very important event.

And so that day on the bathroom floor, I decided to show up. Just to show up, to climb out of my dark individual controllable world and out into the big, bright, messy one. And I didn’t know how to be a sober person or how to be a mother, or how to be a friend. So I just promised myself that I would show up and I would do the next right thing. Just show up Glennon even if you’re scared. Just do the next right thing even when you’re shaking.

And so I stood up. Now what they don’t tell you about getting sober, about peeling off your capes, is that it gets helluva lot worse before it gets better. Getting sober is like recovering from frostbite. It’s all of those feelings that you’ve numbed for so long. Now they’re there and they are present. And at first it just feels kind of tingly and uncomfortable but then those feelings start to feel like daggers, the pain, the love, the guilt, the shame, it’s all piled on top of you with nowhere to run.

But what I learned during that time is that sitting with the pain and the joy of being a human being, while refusing to run for any exits is the only way to become a real human being. And so these days I’m not a superhero and I’m not a perfect human being. But I am a fully human being. And I am proud of that.

I am fortunately and frustratingly still exactly the same person as I was when I was 20 and 16 and eight-years-old. I still feel scared all the time, anxious all the time. Really all the time. I still get very high and very low in life daily. But I finally accepted the fact that sensitive is just how I was made, that I don’t have to hide it, and I don’t have to fix it, I am not broken.

And I have actually started to wonder if maybe you’re sensitive too. Maybe you feel great pain and deep joy but you just don’t feel safe talking about it in the real world. And so now instead of trying to make myself tougher, I write and I serve people to help create a world where sensitive people don’t need superhero capes, or we can all just come out into the big bright messy world and tell the truth and forgive each other for being human and admit together that yes, life is really hard but also insist that together we can do hard things.

Maybe, it’s okay, to say actually today I am not fine. Maybe it’s okay to remember that we’re human beings and to stop doing long enough to think and to love and to share and to listen.

This weekend was Mother’s Day which marked the 11th year anniversary of the day I decided to show up. And I spent the day on the beach with my three children and my two dogs and my one husband. My long-suffering husband you can only imagine. And life is beautiful and life is brutal. Life is brutaful, all the time and every day. And only one thing has made the difference for me and that is this: I used to numb my feelings and hide and now I feel my feelings and I share. That’s the only difference in my life these days.

I’m not afraid of my feelings anymore. I know they can come and they won’t kill me and they can take over for a little while if they need to but at the end of the day what they are is really just guides. They’re just guides to tell me what is the next right thing for me to do. Loneliness – it leads us to connection with other people. And jealousy – it guides us to what we’re supposed to do next and paying guides just to help other people and being overwhelmed – it helps us – it guides us to ask for help.

And so I’ve learned that if I honor my feelings as my own personal profits and instead of running I just be still but there are prizes to be won and those prizes are peace and dignity and friendship.

So I received an email last week and let’s now take to my computer at home.

And it just said, “Dear Glennon, it’s braver to be Clark Kent than it is to be Superman. Carry on Warrior”.

And so today I would say to you that we don’t anymore superheroes. We just need awkward, oily, honest human beings out in the bright, big, messy world. And I will see you there.

You can buy Glennon Doyle Melton's book 'Carry on Warrior' here.

Jean Nidetch: 'I woke up that morning and I was having a 'thin day', Weight Watchers Origin Story - unknown

Unknown, USA

Nidetch claims this is the moment she decided to lose weight, which ultimately led her to founding Weight Watchers

And I remember the day vividly. It was October 1961. I woke up that morning and I was having thin day. You know, you can weigh 214ibs and you can have a thin day. Of course!  You just get up and you're thin, and I felt fabulous. I put on my size 44 muumuu and I remember putting ribbon in my hair, I felt so [inaudible 00:00:33].

As I floated, it seemed, down to the local supermarket, I felt wonderful. When I got into to supermarket, I was pushing the cart in and out of the aisles and filling it with the goodies in case we should have a snowstorm. I told every checker, when she was checking me out, "That's for my children." I want you to know, a checker doesn't care why you buy it. What's worse, my children like Graham Crackers, but all the chocolate cookies I bought were for my children.

As I was walking in and out of the aisle, I met a lady that I had met before. You see, part of the whole thing was that I didn't like her the first time I met her, and there she was, facing me, and she said, "Jean, you look so wonderful," and I thought, "She's noticing. I'm thin."

Then she said, "When are you due?"

Finally I knew I had to do something, so I went to a city obesity clinic.

Brene Brown: 'The power of vulnerability', TED Talk - 2011

12 June 2010, TEDx Houston, Houston, Texas, USA

 So, I'll start with this: a couple years ago, an event planner called me because I was going to do a speaking event. And she called, and she said, "I'm really struggling with how to write about you on the little flyer." And I thought, "Well, what's the struggle?" And she said, "Well, I saw you speak, and I'm going to call you a researcher, I think, but I'm afraid if I call you a researcher, no one will come, because they'll think you're boring and irrelevant."

And I was like, "Okay." And she said, "But the thing I liked about your talk is you're a storyteller. So I think what I'll do is just call you a storyteller." And of course, the academic, insecure part of me was like, "You're going to call me a what?" And she said, "I'm going to call you a storyteller." And I was like, "Why not 'magic pixie'?"

I was like, "Let me think about this for a second." I tried to call deep on my courage. And I thought, you know, I am a storyteller. I'm a qualitative researcher. I collect stories; that's what I do. And maybe stories are just data with a soul. And maybe I'm just a storyteller. And so I said, "You know what? Why don't you just say I'm a researcher-storyteller." And she went, "Ha ha. There's no such thing."

So I'm a researcher-storyteller, and I'm going to talk to you today -- we're talking about expanding perception -- and so I want to talk to you and tell some stories about a piece of my research that fundamentally expanded my perception and really actually changed the way that I live and love and work and parent.

And this is where my story starts. When I was a young researcher, doctoral student, my first year, I had a research professor who said to us, "Here's the thing, if you cannot measure it, it does not exist." And I thought he was just sweet-talking me. I was like, "Really?" and he was like, "Absolutely." And so you have to understand that I have a bachelor's and a master's in social work, and I was getting my Ph.D. in social work, so my entire academic career was surrounded by people who kind of believed in the "life's messy, love it." And I'm more of the, "life's messy, clean it up, organize it and put it into a bento box."

And so to think that I had found my way, to found a career that takes me -- really, one of the big sayings in social work is, "Lean into the discomfort of the work." And I'm like, knock discomfort upside the head and move it over and get all A's. That was my mantra. So I was very excited about this. And so I thought, you know what, this is the career for me, because I am interested in some messy topics. But I want to be able to make them not messy. I want to understand them. I want to hack into these things that I know are important and lay the code out for everyone to see.

So where I started was with connection. Because, by the time you're a social worker for 10 years, what you realize is that connection is why we're here. It's what gives purpose and meaning to our lives. This is what it's all about. It doesn't matter whether you talk to people who work in social justice, mental health and abuse and neglect, what we know is that connection, the ability to feel connected, is -- neurobiologically that's how we're wired -- it's why we're here.

So I thought, you know what, I'm going to start with connection. Well, you know that situation where you get an evaluation from your boss, and she tells you 37 things that you do really awesome, and one "opportunity for growth?"

03:54 And all you can think about is that opportunity for growth, right? Well, apparently this is the way my work went as well, because, when you ask people about love, they tell you about heartbreak. When you ask people about belonging, they'll tell you their most excruciating experiences of being excluded. And when you ask people about connection, the stories they told me were about disconnection.

 So very quickly -- really about six weeks into this research -- I ran into this unnamed thing that absolutely unraveled connection in a way that I didn't understand or had never seen. And so I pulled back out of the research and thought, I need to figure out what this is. And it turned out to be shame. And shame is really easily understood as the fear of disconnection: Is there something about me that, if other people know it or see it, that I won't be worthy of connection?

 The things I can tell you about it: It's universal; we all have it. The only people who don't experience shame have no capacity for human empathy or connection. No one wants to talk about it, and the less you talk about it, the more you have it. What underpinned this shame, this "I'm not good enough," -- which, we all know that feeling: "I'm not blank enough. I'm not thin enough, rich enough, beautiful enough, smart enough, promoted enough." The thing that underpinned this was excruciating vulnerability. This idea of, in order for connection to happen, we have to allow ourselves to be seen, really seen.

 And you know how I feel about vulnerability. I hate vulnerability. And so I thought, this is my chance to beat it back with my measuring stick. I'm going in, I'm going to figure this stuff out, I'm going to spend a year, I'm going to totally deconstruct shame, I'm going to understand how vulnerability works, and I'm going to outsmart it. So I was ready, and I was really excited. As you know, it's not going to turn out well.

You know this. So, I could tell you a lot about shame, but I'd have to borrow everyone else's time. But here's what I can tell you that it boils down to -- and this may be one of the most important things that I've ever learned in the decade of doing this research.

My one year turned into six years: Thousands of stories, hundreds of long interviews, focus groups. At one point, people were sending me journal pages and sending me their stories -- thousands of pieces of data in six years. And I kind of got a handle on it. I kind of understood, this is what shame is, this is how it works. I wrote a book, I published a theory, but something was not okay -- and what it was is that, if I roughly took the people I interviewed and divided them into people who really have a sense of worthiness -- that's what this comes down to, a sense of worthiness -- they have a strong sense of love and belonging -- and folks who struggle for it, and folks who are always wondering if they're good enough.

There was only one variable that separated the people who have a strong sense of love and belonging and the people who really struggle for it. And that was, the people who have a strong sense of love and belonging believe they're worthy of love and belonging. That's it. They believe they're worthy. And to me, the hard part of the one thing that keeps us out of connection is our fear that we're not worthy of connection, was something that, personally and professionally, I felt like I needed to understand better. So what I did is I took all of the interviews where I saw worthiness, where I saw people living that way, and just looked at those.

What do these people have in common? I have a slight office supply addiction, but that's another talk. So I had a manila folder, and I had a Sharpie, and I was like, what am I going to call this research? And the first words that came to my mind were "whole-hearted." These are whole-hearted people, living from this deep sense of worthiness. So I wrote at the top of the manila folder, and I started looking at the data. In fact, I did it first in a four-day, very intensive data analysis, where I went back, pulled the interviews, the stories, pulled the incidents. What's the theme? What's the pattern? My husband left town with the kids because I always go into this Jackson Pollock crazy thing, where I'm just writing and in my researcher mode.

And so here's what I found. What they had in common was a sense of courage. And I want to separate courage and bravery for you for a minute. Courage, the original definition of courage, when it first came into the English language -- it's from the Latin word "cor," meaning "heart" -- and the original definition was to tell the story of who you are with your whole heart. And so these folks had, very simply, the courage to be imperfect. They had the compassion to be kind to themselves first and then to others, because, as it turns out, we can't practice compassion with other people if we can't treat ourselves kindly. And the last was they had connection, and -- this was the hard part -- as a result of authenticity, they were willing to let go of who they thought they should be in order to be who they were, which you have to absolutely do that for connection.

The other thing that they had in common was this: They fully embraced vulnerability. They believed that what made them vulnerable made them beautiful. They didn't talk about vulnerability being comfortable, nor did they really talk about it being excruciating -- as I had heard it earlier in the shame interviewing. They just talked about it being necessary. They talked about the willingness to say, "I love you" first ... the willingness to do something where there are no guarantees ... the willingness to breathe through waiting for the doctor to call after your mammogram. They're willing to invest in a relationship that may or may not work out. They thought this was fundamental.

 I personally thought it was betrayal. I could not believe I had pledged allegiance to research, where our job -- you know, the definition of research is to control and predict, to study phenomena for the explicit reason to control and predict. And now my mission to control and predict had turned up the answer that the way to live is with vulnerability and to stop controlling and predicting. This led to a little breakdown --

-- which actually looked more like this. And it did.

 I call it a breakdown; my therapist calls it a spiritual awakening.

A spiritual awakening sounds better than breakdown, but I assure you, it was a breakdown. And I had to put my data away and go find a therapist. Let me tell you something: you know who you are when you call your friends and say, "I think I need to see somebody. Do you have any recommendations?" Because about five of my friends were like, "Wooo, I wouldn't want to be your therapist."

I was like, "What does that mean?" And they're like, "I'm just saying, you know. Don't bring your measuring stick."

 I was like, "Okay." So I found a therapist. My first meeting with her, Diana -- I brought in my list of the way the whole-hearted live, and I sat down. And she said, "How are you?" And I said, "I'm great. I'm okay." She said, "What's going on?" And this is a therapist who sees therapists, because we have to go to those, because their B.S. meters are good.

 And so I said, "Here's the thing, I'm struggling." And she said, "What's the struggle?" And I said, "Well, I have a vulnerability issue. And I know that vulnerability is the core of shame and fear and our struggle for worthiness, but it appears that it's also the birthplace of joy, of creativity, of belonging, of love. And I think I have a problem, and I need some help." And I said, "But here's the thing: no family stuff, no childhood shit."

"I just need some strategies."

Thank you. So she goes like this.

And then I said, "It's bad, right?" And she said, "It's neither good nor bad."

"It just is what it is." And I said, "Oh my God, this is going to suck.

 And it did, and it didn't. And it took about a year. And you know how there are people that, when they realize that vulnerability and tenderness are important, that they surrender and walk into it. A: that's not me, and B: I don't even hang out with people like that.

For me, it was a yearlong street fight. It was a slugfest. Vulnerability pushed, I pushed back. I lost the fight, but probably won my life back.

 And so then I went back into the research and spent the next couple of years really trying to understand what they, the whole-hearted, what choices they were making, and what we are doing with vulnerability. Why do we struggle with it so much? Am I alone in struggling with vulnerability? No.

So this is what I learned. We numb vulnerability -- when we're waiting for the call. It was funny, I sent something out on Twitter and on Facebook that says, "How would you define vulnerability? What makes you feel vulnerable?" And within an hour and a half, I had 150 responses. Because I wanted to know what's out there. Having to ask my husband for help because I'm sick, and we're newly married; initiating sex with my husband; initiating sex with my wife; being turned down; asking someone out; waiting for the doctor to call back; getting laid off; laying off people. This is the world we live in. We live in a vulnerable world. And one of the ways we deal with it is we numb vulnerability.

And I think there's evidence -- and it's not the only reason this evidence exists, but I think it's a huge cause -- We are the most in-debt ... obese ... addicted and medicated adult cohort in U.S. history. The problem is -- and I learned this from the research -- that you cannot selectively numb emotion. You can't say, here's the bad stuff. Here's vulnerability, here's grief, here's shame, here's fear, here's disappointment. I don't want to feel these. I'm going to have a couple of beers and a banana nut muffin.

 I don't want to feel these. And I know that's knowing laughter. I hack into your lives for a living. God.

 You can't numb those hard feelings without numbing the other affects, our emotions. You cannot selectively numb. So when we numb those, we numb joy, we numb gratitude, we numb happiness. And then, we are miserable, and we are looking for purpose and meaning, and then we feel vulnerable, so then we have a couple of beers and a banana nut muffin. And it becomes this dangerous cycle.

One of the things that I think we need to think about is why and how we numb. And it doesn't just have to be addiction. The other thing we do is we make everything that's uncertain certain. Religion has gone from a belief in faith and mystery to certainty. "I'm right, you're wrong. Shut up." That's it. Just certain. The more afraid we are, the more vulnerable we are, the more afraid we are. This is what politics looks like today. There's no discourse anymore. There's no conversation. There's just blame. You know how blame is described in the research? A way to discharge pain and discomfort. We perfect. If there's anyone who wants their life to look like this, it would be me, but it doesn't work. Because what we do is we take fat from our butts and put it in our cheeks.

Which just, I hope in 100 years, people will look back and go, "Wow."

And we perfect, most dangerously, our children. Let me tell you what we think about children. They're hardwired for struggle when they get here. And when you hold those perfect little babies in your hand, our job is not to say, "Look at her, she's perfect. My job is just to keep her perfect -- make sure she makes the tennis team by fifth grade and Yale by seventh." That's not our job. Our job is to look and say, "You know what? You're imperfect, and you're wired for struggle, but you are worthy of love and belonging." That's our job. Show me a generation of kids raised like that, and we'll end the problems, I think, that we see today. We pretend that what we do doesn't have an effect on people. We do that in our personal lives. We do that corporate -- whether it's a bailout, an oil spill ... a recall. We pretend like what we're doing doesn't have a huge impact on other people. I would say to companies, this is not our first rodeo, people. We just need you to be authentic and real and say ... "We're sorry. We'll fix it."

But there's another way, and I'll leave you with this. This is what I have found: To let ourselves be seen, deeply seen, vulnerably seen ... to love with our whole hearts, even though there's no guarantee -- and that's really hard, and I can tell you as a parent, that's excruciatingly difficult -- to practice gratitude and joy in those moments of terror, when we're wondering, "Can I love you this much? Can I believe in this this passionately? Can I be this fierce about this?" just to be able to stop and, instead of catastrophizing what might happen, to say, "I'm just so grateful, because to feel this vulnerable means I'm alive." And the last, which I think is probably the most important, is to believe that we're enough. Because when we work from a place, I believe, that says, "I'm enough" ... then we stop screaming and start listening, we're kinder and gentler to the people around us, and we're kinder and gentler to ourselves.

That's all I have. Thank you.

Leslie Cannold: 'I had an abortion ... or maybe I didn't', TEDx Canberra - 2012

2012, TEDx event, Canberra, Australia

I had an abortion. Or maybe I didn’t. Why does it matter?

Abortion shame is very zeitgeist at the moment. Or, more precisely and far more happily, anti-shame is very zeitgeist. In The New York Times, in a number of online magazines and on websites like 1 in 3, 45 Million Voices and Exhale women are speaking out. They’re resisting the shame by breaking their silence about their abortions.

But the success of this fledgling speak-out movement is far from guaranteed. Indeed if we want it to succeed we are going to have to help. But before I can tell you what it is that you can do to stand up for women, I really need to take you on a bit of a 360 around shame. I need to talk to you about what it is, how it works and what it does to its victims.

So I thought what I would ask you to do is just actually stop looking at me for a minute, and have a look around you. So look at your neighbours, smile at them, we’re at TED – “it’s cool!”(does a little dance) – and now focus in on the women. So just meet the eyes of the women and smile while I tell you that one in three of those women will have an abortion in her lifetime. Now that would be true if this were an Australian audience or a British audience or an American audience. One in three women will have an abortion in their lifetime. And if you haven’t yet, you can stop looking at each other now.

Now there are a lot of ways that I could have made that point. I could have thrown something like this up on the screen (illustration of 1 in 3 women) and I could have said “One in three Australian, British and American women will have an abortion in their lifetime”. I could have said “According to the World Health Organisation, abortion – medical or surgical – is one of the safest and most common medical procedures. But it’s not the same, is it? What if I had said “Ok, have a look around at everybody in the audience, focus in on the women while I tell you that every single one of those women in the next five years is going to blow her nose”. Not the same.

That is shame.

We actually aren’t born feeling ashamed of anything. We’re not ashamed of our nakedness, we’re not ashamed of our bodily functions, our sexual desires, our reproduction or abortion. We learn, from our communities, what is shameful. And it is the real or perceived oversight of those communities that make us feel shame.

Now shame is about fear, but what are we afraid of? This is Renee Brown (shows picture on screen). She gave a fantastic TED talk – which I really commend to you – about shame and when I went screaming off to find her academic work. And what I discovered was that according to Brown, what shame IS, is the acutely anxiety inducing experience that we are flawed and that others are going to find out. That we are flawed in comparison to other people and other people are going to find that out. And when they do, they’re going to demean us, or ridicule us, or judge us and cast us out.

So I’ve used that word cast out for a reason. And the reason is that I’m trying to underscore the fact that the consequences that people fear, the fear that shame evokes in people, the consequences they fear of being shamed are very, very real. They’re very, very significant.

So in ancient times, if a woman brought shame on her name, or her family, or her community she could literally be thrown out of that community. Cast out. She could be stoned. In some places in the world today, that is still the case.

In our world, a woman might be afraid if people find out that she’s had an abortion that her church community will evict her. Or she might be worried that her family, or her boyfriend, or her husband might throw her out of the house. Or that her friends will start a whisper campaign about her. But the thing is, that those fears all cut to something very, very essential about us; very, very primal. And indeed that is why shame is such an ancient form of social control. Because it actually goes to something that may be hardwired in us. Which is this desire to stay in connection with other human beings. Shame evokes the fear of disconnection.

I had an abortion. Or maybe I didn’t. Why do you care?

That’s the shame cycle (Diagram of shame=silence=ignorance etc.). Shame equals silence equals ignorance. But before I can tell you and will tell you about that silence and that ignorance and how it hurts women I wanna tell you one thing that shame doesn’t do.

Shame does not stop women having abortions.

Now the data on this is not great and I’m a researcher so I care about this kind of stuff, and it’s not great because it’s difficult data to get and because abortion is stigmatised so the research funding isn’t there. But from what we can tell, shame does not stop many, if any women from having abortions. But that doesn’t mean it doesn’t hurt women. It does. And it hurts them by silencing them and by causing ignorance. So let’s talk about that.

Silent women can’t ask for support. Two thirds of women fear that if others find out their abortion they will look down on them and so, nearly that number – 58 to 60% – don’t tell their friends and their family about their abortion and talk about their abortion little or not at all.

Silent women can’t share information. So if I reach out to someone and say “Oh my God, I’ve got, I’m pregnant when I don’t wanna be, I don’t know what to do” and someone says to me “Oh you know, that’s terrible, like that happened to me too and here’s how I felt and here’s how it went and I went to this clinic and it was terrific or I went to that one and it wasn’t so good but WHATEVER you do if you go to this one, be really careful because across the street, there’s a building that’s dolled up to look like the abortion clinic but it’s actually not an abortion clinic at all. It’s run by a pro-life agency and by the time you even work out where you are, they will have told you a whole bunch of false information about abortion, they may have told you you’re going to hell, and by the time you stumble out of there you’ll have missed your appointment.”

Silent women DON’T ask for the laws they need and deserve. And indeed this was actually how I came into the shame issue because I am an abortion rights activist. And in order to change the laws, to try to get things out of the law that hurt women, to try to put things into the law to protect women, I actually need to raise awareness amongst decision makers and amongst the public that there is a problem. So if you think about any news item that you’ve ever seen or a newspaper article about some broad social issue, you’ll see that it starts with a story. It starts with a story of a particular person and that’s so that it doesn’t seem so abstract and you can actually see that this broad social issue that’s being spoken about is actually hurting someone and that’s why it is, we need to make the effort to change things.

But if I can’t get women to tell their stories, I can’t get things in the media. Or if I do get them in the media, I get them buried at the back of the news bulletin or at the back of the paper where they have less influence. I couldn’t even get women to come to Canberra and talk to politicians. And that means that it’s really hard for me to make some of the changes that I wanna make.

So you’ve gotta ask yourself; if shame is so bad for women, then why is it still happening? And who is doing it?

Well the answer to who’s doing it is the Shame Stokers. And the reason is that shame is a gift that just keeps on giving. Shame equals silence equals ignorance equals shame equals silence equals more ignorance equals more shame and more silence and more ignorance. And that silence and that ignorance is the fertiliser for the ground on which repressive abortion laws and policies flourish.

So I wanna give you a bit of a feel for what Shame Stoking looks and sounds like. Because the weird thing is that women who’ve had abortions can hear it and it is around us all the time. But people who aren’t tuned into it can’t hear it. So it’s really important that you see it, you hear it and you recognise when it’s about. Ok, so here’s some examples, and I should say to you that I could have picked from thousands, so this is really just a tasting plate.

“A legacy of unutterable shame.” That was said by an Australian Health Minister, who said that Australia’s abortion rate was a national tragedy that left a legacy of unutterable shame.

“Vaginally penetrated when they got pregnant.” This was said very recently by an American legislator who was one of a number who’s trying to change laws, and indeed some of these laws have been successfully implemented, that require a woman who is seeking abortion to have an ultrasound. But you see most women who have abortions have them very early on in pregnancy, which means that kind of usual ultrasound doesn’t work. You can’t see anything; it’s all just too small. So, instead, they mandate that a probe be inserted inside that woman. This is a non-medically indicated, trans-vaginal ultrasound. The woman’s doctor is forced to give it to her, even though there’s no medical reason for it and she may have denied consent. And when it was pointed out to this legislator that in any other context you would call that rape, he essentially said “Well, we don’t have to worry about those sort of women because, after all, they were vaginally penetrated when they got pregnant.”

And our final Shame Stoking is “abortion is a worse moral scandal than priests sexually abusing young people”. This was said by a Catholic Archbishop, again not long ago, to a group of young people. And I just wanna stop for a minute on this one, and just underscore what is really being said here. So what is being said is, the moral evil that we need to concern ourselves about is NOT men in positions of authority and trust who rape children and or then cover it up. The REAL moral problem of our time is women who have abortions.

So there’s a couple of messages that the Shame Stokers are sending us there.

One message is DIRECT to women who’ve had abortions. So what they’re worried about is if they talk about their abortion, they’ll be shamed and judged and cast out. And the Shame Stokers are saying to them “you bet your LIFE you will. You put your head above the parapet Missy and we will kick you in the teeth.”

And the second message the Shame Stokers are sending is to all of us. And it’s really a lesson worth learning. And it is this. That if you don’t tell your own story, other people will tell that story for you. Silence does not stay silent for long.

So. This is an optimistic challenge, right. And I’ve just dragged ya right down into the mud. Do not worry because we are heading up! And the reason we are heading up is because there is absolutely nothing that I have just told you that you can not do something about.

(Crowd starts applauding) You bet! You bet!

Communities cause shame. And communities can stop it. So let’s talk about what you can do.

Reach out. (Photo of two hands holding, “You are not alone” written on their arms.) Women who’ve had abortions who feel supported experience less shame. And less of shame’s noxious, down stream consequences. So let the women in your world know that you are NOT a Shame Stoker. That if they talk to you about a problem pregnancy or an abortion, you will NOT judge them. You will NOT shame them. But YOU will listen with empathy and compassion, and let them know that they are not alone.

You can dance. (Photo of a woman wearing a T-shirt that says “Abortion. A fact of life. Let’s end the stigma.) At the end of this month in Melbourne, women, and men are going to get out onto the street wearing T-shirts like that and they’re going to say exactly that. “We are not Shame Stokers.” They are going to say to women “We wanna stand up for you and AGAINST abortion shame”. And we are hoping, umm, Reproductive Choice Australia is hoping – ‘cause we’re organising this event – we are desperately hoping it’s gonna catch on like wildfire; we want it to go right around the globe; we want communities everywhere to kick this sort of positive, uplifting message to send out to the women in their community that says “The time for shame is over”. And if you can’t get to one of those flashmobs and/or if you do go and you wanna do something else, you can actually take that precise pledge online. You can pledge that you will not engage in abortion shaming and you will not tolerate it when others do so. So please keep an eye out for that opportunity.

So if you do all that, what do you get? So instead of this negative, downward cycle -of shame equals silence equals ignorance which causes more shame and more silence and more ignorance – you get an upward spiral. (Diagram of empathy=connection=empowerment, etc.).

You get, empathy equals connection equals empowerment equals empathy equals connection equals empowerment for women. So, some of you may have seen this, I’ll just give you a quick chance to just run your eyes over it. I in no way mean to disrespect the person who said this. Ok, he said, he was one of the first people to speak out against the Nazi’s and he deserves heaps of respect. But I’ve put it up there because the truth is that I don’t really like it.

(Quote by Martin Niemoller. “First they came for the Socialists, and I did not speak out because I was not a Socialist. Then they came for the Trade Unionists, and I did not speak out because I was not a Trade Unionist. Then they came for the Jews, and I did not speak out because I was not a Jew. Then they came for me, and there was no one left to speak for me.”)

And I don’t really like it because, even though it’s true, even though it is true – that one of the reasons we act morally is because we’re worried that if we don’t stand up for people – women who have abortions, say – that women who have abortions won’t stand up for us. That is true. But I’m looking for something morally, much bigger than that.

I’m looking for something more Lady Diana. Who in the midst of the Aids crisis, when people were seeking to shun and stigmatise and judge and cast out anybody who was thought to have the virus and gay men; she started REACHING out her hand to touch those people and to shake their hands.

I’m looking for something more like the King of Denmark, who the apocryphal story goes – when the Nazi’s came into Denmark and said “You have to brand all your Jews with a star” he said “Well, fine. But if that’s gonna happen, I’m gonna wear a star too and so is every Dane.”

I’m looking for people who wanna say “Not by my hand, not on my watch, because I am the strong one. And standing up for women against abortion shame – it is just the right thing to do.”

And so. I had an abortion. Or maybe I didn’t. But I hope by now you know, that it doesn’t matter either way…because we won’t be silent any more.

Thank you.

Anthony Griffith: 'It was the best of times. It was the worst of times', Moth Presents, US Comedy Arts Festival - 2003

28 February 2003, Moth Presents, Aspen, Colorado, USA

Charles Dickens' classic tale, 'Tale of Two Cities' starts off with the phrase 'It was the best the times. It was the worst times'. 

In 1990 I moved from Chicago with my family to LA to seek my fame and fortune and and (within) a couple weeks of being there I got two important phone calls: one was from the talent coordinator for The Tonight Show offering me to have a spot as a comedian of on The Tonight Show and the second call was that my daughter's doctor had called up to say that her cancer had resurfaced.

A year prior she was diagnosed with cancer and we fought it and it went into remission and now it was back. And for that next year my life was pretty surreal -- its was like two different personalities,  during the day, in order to keep my daughter at home with me I would have to learn CPR and how to work a heart monitor and administer medicine, and all these technical terms -- take her back and forth to get her platelets and blood and check up on her.

And at night I would go from club to club with the talent coordinator and I would work on my set, and try to perfect it and I would meet veterans like George Wallace and Seinfeld and Roseanne, and I thought that everything was great because we had beat the cancer
before, and we would beat it again, and this was the first time that I was going to be in front of millions of people on The Tonight Show.

And the first time on The Tonight Show I was extremely nervous.  All I could think about while I was backstage being introduced was 'don't mess up, just don't mess up - whatever you do don't mess up'. And then the curtains opened up and there were 600 people, and the camera and Johnny's over there and the band is over there, and I don't know what I said for the next six minutes but I get six applause breaks.

And the great part of that night was that I was going to my car and I met Johnny who was going to his car, and it was just a private moment between us in a parking lot, of him saying, "you were very funny, were extremely funny --  start working on your second Tonight Show,  because I want you back.

By the time I get the official call for my second Tonight Show, my daughter was admitted to the hospital. If you don't know about cancer when it comes back, it comes back hard. It's like beating up a gang banger for the first time, and then he's coming back, and he's coming back meaner and stronger and he's coming with his friends.

So in order to compensate for that you have to raise the chemo and you have to raise the medicine, and you have to raise the radiation which is difficult for an adult but she was only two.

So she was bald, which she doesn't mind cuz every kid in the ward is bald, and she thinks this is just part of life, and she can't keep her food down and ... you're not prepared for this ... there's no books, there's no home ed class to teach you how to deal with this. And you can't go to a therapist because in the black world a therapist is taboo -- reserved for rich white people.

So you're tryin to figure it out -- what did I do? Maybe it's something I did. Maybe it's something my wife did. Maybe my doctor diagnosed it erroneously. Something.

But at night I still have to be a comic, I have to work The Tonight Show, because that's what I do, I'm a clown. I'm a clown whose medical bills are raising, whose one step from being evicted, whose one step from getting his car repo'ed -- and I have to come out and make you laugh because no-one wants to hear the clown in pain. 'Cause that's not funny!

And my humor is becoming dark and it's becoming biting and it's becoming hateful and the talent coordinator is seeing that there's a problem because NBC is all about 'nice' and 'everything is going to be okay' and we're starting to buck horns because he wants everything light and I wanna be honest and tell life, and I'm hurting, and I want everybody else to hurt!

Because somebody is to blame for this!

So I buck up, and I suppress my anger and I form and develop a nice cute routine for the second Tonight Show. And i get applause breaks and I get asked to come back for a third time. And I'm perfecting my third set when a doctor asked me to come in, and I know something's wrong because even the doctor is crying.  And doctors don't cry.

And he says 'We've done all we can. There's nothing else for us to do.'

And I say 'how much time does she have?'

And he says 'at the most, at the most, six weeks'. And I should plan for that. 

And I'm thinking how do I plan for that?

I have a plan to buy her her first bicycle. I have a plan to walk her to school. I have a plan to take pictures of her on her prom. I have a plan to walk her down the aisle to get married ... how am I going to plan to buy her a dress to be buried in.

And I'm trying to keep it together, 'cause I'm the man, and I'm the man of the house,  and I don't wanna cry but it's coming, and I'm trying to tell myself, 'Tony', I'm trying to beg the world 'just give me a chance, just give me a chance, just let me take a breath. Stop just for a minute. I wanna call my parents, and tell em 'what do I do'? I don't know what to do. I'm a grown man, and I don't know what to do.

And a voice in me, comes up like Denzel from Training Day 'man up nigga! You think you're the only one losing kids today! Twenty five kids walked in here with cancer, only five walkin out! This aint no sit com. It don't wrap up all nice and tidy in thirty minutes. This is life. Welcome to the real world!'

And he was right. So I bucked up. Because that's what I'm supposed to do. And on my third Tonight Show, and by that time my daughter had died, and I had six applause breaks that night.

No one knew that I was mourning. No one knew that I could care less about The Tonight Show or Johnny Carson. In 1990 I had three appearances with the legendary Johnny Carson and a total of 14 applause breaks.  And I would have given it all if I could have just one more day sharing a bag of french fries with my daughter.

It was the best of times.

It was the worst of times.

Thank you.

Stella Young: 'And these images, there are lots of them out there, they are what we call inspiration porn', TEDxSydney - 2014

April 2014 TEDxSydney, Australia

I grew up in a very small country town in Victoria. I had a very normal, low-key kind of upbringing. I went to school, I hung out with my friends, I fought with my younger sisters. It was all very normal. And when I was 15, a member of my local community approached my parents and wanted to nominate me for a community achievement award. And my parents said, "Hm, that's really nice, but there's kind of one glaring problem with that. She hasn't actually achieved anything." (Laughter)

And they were right, you know. I went to school, I got good marks, I had a very low-key after school job in my mum's hairdressing salon, and I spent a lot of time watching "Buffy the Vampire Slayer" and "Dawson's Creek." Yeah, I know. What a contradiction. But they were right, you know. I wasn't doing anything that was out of the ordinary at all. I wasn't doing anything that could be considered an achievement if you took disability out of the equation. Years later, I was on my second teaching round in a Melbourne high school, and I was about 20 minutes into a year 11 legal studies class when this boy put up his hand and said, "Hey miss, when are you going to start doing your speech?" And I said, "What speech?" You know, I'd been talking them about defamation law for a good 20 minutes. And he said, "You know, like, your motivational speaking. You know, when people in wheelchairs come to school, they usually say, like, inspirational stuff?" (Laughter) "It's usually in the big hall."

 And that's when it dawned on me: This kid had only ever experienced disabled people as objects of inspiration. We are not, to this kid -- and it's not his fault, I mean, that's true for many of us. For lots of us, disabled people are not our teachers or our doctors or our manicurists. We're not real people. We are there to inspire. And in fact, I am sitting on this stage looking like I do in this wheelchair, and you are probably kind of expecting me to inspire you. Right? (Laughter) Yeah.

Well, ladies and gentlemen, I'm afraid I'm going to disappoint you dramatically. I am not here to inspire you. I am here to tell you that we have been lied to about disability. Yeah, we've been sold the lie that disability is a Bad Thing, capital B, capital T. It's a bad thing, and to live with a disability makes you exceptional. It's not a bad thing, and it doesn't make you exceptional.

 And in the past few years, we've been able to propagate this lie even further via social media. You may have seen images like this one: "The only disability in life is a bad attitude." Or this one: "Your excuse is invalid." Indeed. Or this one: "Before you quit, try!" These are just a couple of examples, but there are a lot of these images out there. You know, you might have seen the one, the little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon fiber prosthetic legs. And these images, there are lots of them out there, they are what we call inspiration porn. (Laughter) And I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So in this case, we're objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, "Well, however bad my life is, it could be worse. I could be that person."

But what if you are that person? I've lost count of the number of times that I've been approached by strangers wanting to tell me that they think I'm brave or inspirational, and this was long before my work had any kind of public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name. (Laughter) And it is objectifying. These images, those images objectify disabled people for the benefit of nondisabled people. They are there so that you can look at them and think that things aren't so bad for you, to put your worries into perspective.

 And life as a disabled person is actually somewhat difficult. We do overcome some things. But the things that we're overcoming are not the things that you think they are. They are not things to do with our bodies. I use the term "disabled people" quite deliberately, because I subscribe to what's called the social model of disability, which tells us that we are more disabled by the society that we live in than by our bodies and our diagnoses.

So I have lived in this body a long time. I'm quite fond of it. It does the things that I need it to do, and I've learned to use it to the best of its capacity just as you have, and that's the thing about those kids in those pictures as well. They're not doing anything out of the ordinary. They are just using their bodies to the best of their capacity. So is it really fair to objectify them in the way that we do, to share those images? People, when they say, "You're an inspiration," they mean it as a compliment. And I know why it happens. It's because of the lie, it's because we've been sold this lie that disability makes you exceptional. And it honestly doesn't.

And I know what you're thinking. You know, I'm up here bagging out inspiration, and you're thinking, "Jeez, Stella, aren't you inspired sometimes by some things?" And the thing is, I am. I learn from other disabled people all the time. I'm learning not that I am luckier than them, though. I am learning that it's a genius idea to use a pair of barbecue tongs to pick up things that you dropped. (Laughter) I'm learning that nifty trick where you can charge your mobile phone battery from your chair battery. Genius. We are learning from each others' strength and endurance, not against our bodies and our diagnoses, but against a world that exceptionalizes and objectifies us.

I really think that this lie that we've been sold about disability is the greatest injustice. It makes life hard for us. And that quote, "The only disability in life is a bad attitude," the reason that that's bullshit is because it's just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp. Never. (Laughter) (Applause) Smiling at a television screen isn't going to make closed captions appear for people who are deaf. No amount of standing in the middle of a bookshop and radiating a positive attitude is going to turn all those books into braille. It's just not going to happen.

I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a 15-year-old girl sitting in her bedroom watching "Buffy the Vampire Slayer" isn't referred to as achieving anything because she's doing it sitting down. I want to live in a world where we don't have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people, and I want to live in a world where a kid in year 11 in a Melbourne high school is not one bit surprised that his new teacher is a wheelchair user.

Disability doesn't make you exceptional, but questioning what you think you know about it does.

Thank you.

(Applause)

Tony Wilson: 'Fine thanks, and you?', Cancer Council Arts Awards, 2012

29 July, 2012, Melbourne Australia

As always, it's a pleasure to be here today - this ceremony for me always has an almost ecclesiastical feel, as we share and honour work inspired by the pain and trauma of a cancer diagnosis. My category is the young writers category, and the task of judging these pieces is, I promise you, a half day, half box of tissues affair. But the standard is always exceptional and this year, I promise, is no exception.

We all know our own pain best. I don't wish to deflect from the outstanding work of young writers in the audience today, nor do I wish to conflate my pain with theirs. But given the cathartic notes this event is capable of adducing, I'll ask your permission to share a little of my past year, particularly in light of one entry that had an enormous impact on me.

I haven’t felt comfortable speaking much about Jack’s cerebral palsy. We found out on my wife’s birthday last year, a devastating ‘can you come in’ phone call from a paediatrician on the eve of our son’s discharge from the Mercy’s Special Care Nursery.

Amidst the intermittent joy of having a new baby, it’s been a year full of uncertainty and fear. How severe will it be? What faculties will be affected? Will he walk? Talk? Go to school? Have friends? Leave home? Fall in love?

Will he be okay when we die?

Will he be okay?

The best advice any medical practitioner gave me over the twelve months was a GP at Clifton Hill Medical Centre. ‘Stop trying to imagine the future because you won’t get it right. Life’s too mercurial for any of us to imagine what’s going to happen.’

I have been almost entirely unsuccessful at following this advice.

Nevertheless, I stand here today, and I feel capable of articulating the pain. The sharp grief of twelve months ago has been worn smooth by simple effluxion of time.

It’s my fifth year doing this job, and it’s always an emotional ceremony. As most of you know, the idea of the awards is that people who have been touched by cancer express their experience through art – whether it be film, photography, visual art, poetry or short stories.

Last year, as I stood here, I was full to the brim with my own sadness, and it overflowed into great show stopping sobs. I battled on, embarrassedly aware that everything had suddenly become about me, even when so many of you have your own battles, your own dark clouds to worry about.

Today, I won't fall apart. Certainly not in that way. Possibly because I’m feeling stronger, that the sadness for the loss of the dream of a perfect baby has been healed by time spent with the wonderful baby we do have. For Jack is wonderful, and the easiest parts of what has been a harrowing journey have been those spent with him in arms. But just as likely, it’s passage of time.  Maintaining the grief is as exhausting as maintaining the rage, and although the sadness is no longer so fresh that I’m breaking down in public situations, I’m still looking at every alert, crawling, fully-sighted one year old and thinking ‘not my baby’, and I’m still looking at active, able bodied adults and thinking ‘will he ever?’.

How does it go again? ‘Stop trying to imagine the future because you won’t get it right.’

The other consistent advice we have been given by other parents of children with disabilities is to accept help, support each other, and enjoy the victories when and if they occur. A poem we’ve been forwarded several times is ‘Welcome to Holland’ by Emily Pearl Kingston. It’s right about the windmills – they are very nice – but it’s also right about the pain. We wanted to go to Italy.

Of course pain is inevitable. it’s impossible to reach middle age without facing one or all of death, illness, unemployment, estrangement, betrayal, rejection or failure. One of the privileges of judging the Cancer Council Arts Awards is that the entrants lay bare their pain in a way that takes a courage and openness that I, as a writer, rarely feel capable of. Indeed I’m only saying this because these young artists we're honouring today inpsired me to do so.

There were many great entries, all of which are profiled on the Arts Awards website. You can vote for a favourite as part of the People’s Choice award. Here are a few of my mine:

In the children’s visual art category, Lanya Johns painted this amazing piece ‘Three Faces Have We’. Her artist statement reads:

“I remember hearing my Mum talk about a quote once that goes something like, ‘Everybody has two faces – be careful of those with three’. I feel sometimes like cancer has given us three faces. There is the public smiley face, the private and terrified face – and then the face that we all try to protect each other from seeing. We are lucky we three. We have each other, and all our faces.”

In the adult’s visual art category, the commended entry was ‘Ben’ by Vanessa Maccauley

In the Indigenous Art category, Rex Murray painted this affecting piece about the feeling of helplessness he had dealing with the death of his brother, the strong, active kid that he used to jump into rivers with as a kid.

And in the Children’s Writing section, the one that I judged, the winning entry was this tribute by Mena Sebo to her Mum, ‘I Love You as Much as You Love Me’.

But maybe the piece that spoke to me more than any other was the one I awarded the top prize in the Youth Writing section. It’s a poem by Elle Richards, ‘What goes unsaid’ and it’s about the everyday ‘how are you’ gambit that opens so many of our social interactions. It's called, 'What goes unsaid'

What Goes Unsaid

A friend stops and waves,
“Hey! It’s good to see you, how are you?”

I was only twelve.

Cancer had lurked in my hallway; tapped on my window.
It had seeped through the cracks in my wall.
I had breathed it in, let it fill my lungs.
It never left me,
never stopped haunting me.
Good morning Cancer,
but never goodnight.
It had shadowed the dark,
followed me to school.
It had entwined itself in my thoughts,
left me sleeping with the light on,
afraid of its presence,
angry at its power.

I had sat by as chemotherapy claimed my mother’s hair,
turned her skin yellow and made her bones weak.

I had watched radiation therapy.
Seen my mother’s body burned by clunking machines.
The machines had no feelings, they burned scar upon scar.
But my mother had feelings, and she cried.
A lot.

I had screamed.
Slammed doors, punched pillows.
I had felt anger claw at my stomach;
it had made me feel sick and alone.
I had let tears run to my mouth and soothe my cracked lips.
I cried until I felt no emotion at all. None.

I had seen my mother break down in the kitchen.
Screaming, panicking.
She had curled herself in a ball; hugged her knees and screamed.
I had sat next to her; I didn’t say anything.
I didn’t touch her. I just sat there.
Next to her.
Just as afraid.
I had been jealous of the gifts that landed at our front door.
Beautiful soaps and chocolates.
One after the other.
Not for me.
Not a single card or flower.

I had seen her with only one breast.
I had seen her, too sick and too tired to move.
I had seen my mother tangled in tubes.
Covered by white sheets,
white pillows,
white walls,
white floors.
And unnaturally white skin.

I had checked on her every morning.
Every
single
morning.

I checked while she was sleeping,
hoping she was just sleeping.
I had slipped into her bed and wrapped myself in her blankets.
I had gently maneuvered myself between her warm arms and cuddled my head near
her chest. Gingerly. Carefully.
I had rested my chin near the scars that were her breast.
And laid there, warm and comfortable,
but still afraid.

Always afraid.

But every scar on my mother’s chest,
every tube in her arm,
every tear on her face,
made me stronger.

And I believed if I gave all my strength to my mother, she would live.

So I blew it into a purple crystal and put it by her bed.

Now this man is smiling at me, asking how I am.
And it takes all my strength to reply simply;
“I’m good thanks, and you?”

Congratulations Elle. Congratulations to all our winners. Thank you.