Theresa Flavin: "Turning 65 and diagnosed with dimentia, you are ostrasized, dehumanized, institutionalized, homogenized, collateralized. None of those are compatible with human rights."

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Welcome.

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This is Ilana Landsberg-Lewis, your host for the Wisdom at Work podcast.

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Elder Women, older Women and Grandmothers on the Move.

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What follows is a special and exciting 10-part series.

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Have you ever thought about how human rights plays an essential and meaningful role in our older age?

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Well, you're in the right place.

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You're listening to Age with Rights and Dignity 10 interviews in which we will hear from older and younger advocates from different corners of the world.

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These committed champions will share with us why they care about the rights of older persons and what they are doing to help bring a new United Nations Convention on the Rights of Older Persons into being, for you and for me, no matter how old we are.

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Now Join the movement and raise your voice.

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Go to the Age Noble Human Rights Day 2024 blog to find out more that is A-G-E-K-N-O-W-B-L-Ecom and sign the global petition for the UN Convention on the Rights of Older Persons.

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I'm also excited to introduce you to two wonderful guest interviewers, younger women who are committed to these issues and will be joining me in this series to interview some of our esteemed guests Faith Young and Kira Goenis.

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Thank you for joining us, enjoy this special initiative, and my thanks to Margaret Young, the founder of Age Noble for bringing this opportunity to us to hear from these important guests who promote the human rights and the dignity of older persons the world over.

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Today, I have the great pleasure of speaking with Teresa Flavin, from Australia, who is a passionate advocate for the UN Convention on the Rights of Older Persons and the Rights of those Living with Dementia.

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Welcome, teresa, it's wonderful to have you on the podcast with me today.

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Thank you, alana.

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It's my pleasure to be here.

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I'm in Sydney, australia.

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I'm on the land of the Sarawal original people and I'm grateful and pay my respects to the original people of the land that I'm living on today.

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Beautiful.

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I love that we can honour that in this conversation.

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Thank you, teresa.

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I'm going to invite you to introduce yourself to those who are listening to us.

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Hello, alana, my name is Teresa Flavin.

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I'm originally born in Northern Ireland in the 1960s, which was a colourful place to be in those times.

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I have five adult children and eight grandchildren.

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I was diagnosed with younger onset dementia when I was in my early 40s, which was a big shock to me.

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I really didn't appreciate the impact that that would have on my life from an external perspective until I got over the shock and started to try to integrate into society again and just live a normal life with a little bit of support.

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And I was very crushed to find out that the label of dementia was enough to put me to the proverbial wastebasket of life, and I wasn't happy with that.

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So I moved into the advocacy space to speak out a little bit and slowly but surely I realized that it wasn't just dementia that was setting me apart.

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It was this whole concept of ageism in general and how that relates to society's view of older people and utility and consumption.

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It really startled me to see just how systemic this was.

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This wasn't people in the community calling me names.

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This was something that was baked into our world and I want to change that.

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Yeah, that makes so much sense to me because we often think of dementia as something that happens to older people and that's already something that's invisible in our society so much of the time, and it's also something we don't want to think about.

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Listening to what you just said, how has it been for you as you come to this advocacy and wanting to give voice to this and what you are seeing as a systemic discrimination and marginalization?

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I really hear that.

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That really resonates when you say it.

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I've discovered that there is no room for my voice.

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My voice is not welcome In the Western society.

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We talk a lot about consumer involvement or patient and public involvement, and collaboration and co-design.

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We have many, many words for this sort of nebulous concept of the person with a specific condition leading or participating actively in development of products or services and policies and things, and the reality of that is quite different.

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For example, our advocacy organisations will receive a great deal of government funding and they promote outwardly the human rights of older people and people living with dementia, but they're certainly not employing us.

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We are an arm's length advisory committees where we're again segregated, set off to the side with no power or influence, where our voices are rolled up and packaged only to be virtually ignored because we're not embedded into these organisations.

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If I were to say one thing about advocacy and activism for the human rights of people living with dementia and all older people, I would say demoralizing is where I'm at, with the lack of change and fighting the vested interests of an industry that is dedicated and predicated on the fact that nothing changes Very difficult.

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That's hard to hear, but it makes the struggle around defining it, around human rights, very poignant.

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The right to self-determination is a universal human right.

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In the context of what you've been experiencing, and recognizing the demoralization that you're feeling, what does that right to self-determination mean for older persons and people living with dementia in terms of how we think about human rights?

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What does that mean?

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I'm often asked the question, ilana, why do older people need a specific convention just for them?

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Don't they already have the human rights, as you say, captured and embedded in various international treaties?

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And I used to think that too, until I found myself in this position.

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And if I were to answer the question of why do older people need this specific protection in one word, I would probably point to institutionalization.

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So over the past, maybe since World War II, our Western society in particular have worked very hard on deinstitutionalization as a human rights matter, all the way from mother and baby homes, residential schools, asylums, orphanages, all of those types of things.

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The generation that put the work and the power behind those initiatives to de-institutionalize were the people that are now older people.

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Today, Suddenly, we're waking up realizing we've done all of this work.

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It's transformational.

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But we're going into an institution ourselves and we're being groomed to say yes to institutionalisation in a way to avoid the guilt of our burden on our families and our descendants and the economy.

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And that is really where it gets very sinister for me, because we're in this position where your human rights are only as useful as your ability to claim and defend them and when you become older, potentially with more chronic health problems.

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You get dementia.

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Your ability to independently claim and defend those rights becomes so diminished, and systemically you're just excluded out of life until eventually you're living in the equivalent of a car park somewhere out of town.

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It's such a deeply important part of human rights, isn't it that participatory piece where communities and individuals should be able to participate in the claiming, defending, protection, enjoyment of their human rights and be consulted and counted?

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Can we talk a little bit about your thoughts and your insights around the limitations on the rights of older persons to exercise their choices are frequently the result of stereotyped assumptions about capacity.

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As you're saying, Very rarely do we talk about their desires or their needs as defined by them, and how do ableism and ageism limit the ability to have your choices and decisions heard and respected?

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This presents in so many ways.

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So maybe I'll just try and narrow that down a little bit.

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I'll give you a very personal example.

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When you're diagnosed with dementia, the first thing you're told is to get your affairs in order.

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You're not offered therapies.

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You're not offered occupational therapy, speech therapy, things that will help you maintain your function as long as you can.

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You're told to get your affairs in order.

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So, obediently, I tried to get my affairs in order.

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So I looked at an advanced care directive.

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It was a pro forma document that comes from our state government and when I read it it was a list of six principles that I would find, six situations and I could tick would I find this bearable or unbearable?

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When I read the six symptoms, they were the symptoms of dementia.

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So when I read that and I thought, okay, so I'm being expected to tell someone if I find these things bearable or unbearable, but with no potential outcome, it doesn't matter.

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These are the symptoms of dementia, the most prevalent killer of women in Australia.

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So when you try to make an advanced care directive, essentially all you can say is that dementia is unbearable.

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Dementia does as everyone knows.

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It impacts your memory and your functionality.

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So for me to try and transfer the symptoms of dementia and project the potentially dying of something else it was too much of an intellectual stretch.

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So I called a helpline to ask for further information.

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I didn't want support, I just wanted information.

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I wanted to map what the government had given me to what the advocacy organizations would advise what the advocacy organizations would advise.

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And when I called them, my experience was, in the second sentence, to have my capacity questioned Do you have the capacity to undertake that?

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Because that can be challenged.

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And that was quite a shock because I was having quite a lucid conversation asking for information, not asking for guidance, only to find that the organization wouldn't send me any information unless I gave them the number of another human being that they could call.

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Ultimately, the advocacy organization called me again and told me that, yes, advanced care directive, as it's called here in Australia, probably wasn't a good idea because my capacity was compromised in their opinion based on an introductory telephone call.

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And the conversation very, very quickly went from me asking for information to them giving me information on do not resuscitate instructions.

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This was not my idea at all.

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It broke my spirit, ilana.

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It absolutely broke my spirit.

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Because you're guilted, you're shamed into making arrangements really for the convenience of the people around you.

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There was no convenience in that situation for me, with absolutely no concept or no acknowledgement of just how nihilistic this situation actually was.

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So when we're talking about the ability to make a decision, it's almost as though I don't exist.

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I've been unpersoned.

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Nobody will have a conversation with me unless there's another person present who's real, because I'm essentially a ghost in the world.

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I go to the doctor's office.

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They talk to the person beside me because I'm already a ghost and I'm still reasonably functional.

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And I've seen how it goes.

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If, let's say, english is your second language here in an English speaking country, if you have different beliefs, different cultures, different sexuality, all of those intersections make you even more of a ghost.

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I'd like our world to make room for us.

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Absolutely.

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Yeah, that's so painful, Teresa.

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I find that really painful because you're so thoughtful, and this is something that we see with ageism and ableism.

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These are words that have deep meaning, but we use them, I think, pretty pro forma a lot of the time, and you're so right.

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If I add to it the elements that you're talking about, where you don't even have the respect or the ability to speak for yourself, that's excruciating to hear from you, but also alarming if you think about what that means for older people who are seen as less and less capable, as less and less able to speak for themselves.

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You have a powerful window into that othering and that diminishing.

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You talk about it in terms of systemic discrimination and human rights.

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How do you come to this?

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To understand this is systemic and not just your personal experience?

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Well, it happened organically, I guess, and as I started to hit these same systemic roadblocks of no matter what sort of service I wanted or anything that I needed or anything I had to sign had to be co-signed once dementia was acknowledged.

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And I hit the same thing again and again, but at no point was anybody actually doing anything to establish if I had capacity or not.

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And I became aware of this organization called Dementia Alliance International, dai, or an organization founded by and completely comprised of people living with dementia.

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There's no one speaking for us, it's just us.

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We're not funded by anybody, we have no agenda and we offer each other peer support.

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It's usually by Zoom.

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It's an international thing.

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I was very reluctant to do peer support because I had it in my head that I'm going to have to listen to a whole lot of hard luck stories and I thought I don't have the resilience to uplift anyone else.

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I'm struggling myself.

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So I had a really inverted view of it.

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But what I discovered because there was no professional there intervening or casting aspersions or managing us that it was actually very, very uplifting.

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Yes, we would say this happened, but then we would come back with how we got through it.

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So it actually was a sharing of solutions more than problems.

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But, as I spoke with hundreds of people all over the world experiencing the same things that had nothing to do with them as a personal human being, it all had to do with the context and the cohort and the age group and the government, the social security systems, the health care systems, and these layers and layers and layers that were just pushing down on people, pressuring them to move out of society and into an institution, institution across the world, this consistent pattern of marginalizing people based on their perceived whether they were be a consumer, a taxpayer, a revenue generator, whatever that might be, in whatever context.

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I couldn't quite believe the scale of what I was looking at until I started listening to all of these people with very different situations, but all with the same story trying to find room for themselves in societies that had no room for them.

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Yeah, and again it comes back to an endemic and systemic problem.

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And so I want to come back for a moment to this UN Convention to protect and promote the rights of older people.

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When you talk about the scale, when you talk about sort of the global reality of a whole vibrant, alive group of people in our midst whom we love, these aren't, you know, statistics.

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These are people that we love, live amongst us, who are precious to families and to communities, us who are precious to families and to communities.

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It does make a convention, even though conventions feel very far away from us and human rights treaties feel pieces of paper but it does.

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When you think about the scale of it, what are your thoughts about it?

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Well, when I attended the United Nations Open Ended Working Group on Aging, aging, and they had spent 13 years talking with no action, that to me was probably the biggest acknowledgement that older people are not a priority.

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13 years, and I started asking around.

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When I was there, you know and I guess because I have dementia I don't have that sense of, oh, this person's too important to talk to I kind of missed all of that.

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So I was just approaching people and what was very interesting to me was that when I asked questions like how did the disabled community manage to get themselves a profile?

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How did indigenous peoples children?

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How did that happen?

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And why are we stalling with older people, and their response was because you're too nice, you're too accepting, we're everything that society wants us to be the stoic.

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We don't want to be a nuisance, don't want to be a burden.

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I was quite appalled because I was actually the first person ever with dementia to turn up to the United Nations Open-Ended Working Group on aging.

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There are like 400 million people in the world living with dementia and I'm sure that's probably a very big understatement and no people.

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There were no older people speaking.

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There were organizations speaking for us, some of them comprised of older people.

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They weren't the people that were.

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This was going to affect and that's where the wheels really come off the wagon.

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We have these organizations working for us but not with us, and you lose a lot of veracity in that transfer process, because there is nothing more moving than a person living with dementia telling you I don't want to go to an institution.

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That's quite different to an academic, and I found that that was very moving being there, and it was also very moving looking at the responses of the decision makers that were there.

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It's also very moving looking at the responses of the decision makers that were there.

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So really, we need to work harder, work better, and us older people need to really get across that this is not good enough and understanding that, yes, we will be challenged, but plan for that.

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We are not powerless individuals.

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People treat us as if we are, so we start to believe it.

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We start to feel vulnerable and weak.

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When we actually do have social clout, we're just not brandishing it in the way that we need to.

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So I would say the situation is not hopeless, but unless we get a really big blunt instrument that can be used to make our societies change so that we are equal all the way through the life course, not just important while we are generating cash or whatever your bar is, we need the full life course.

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In an ideal world we wouldn't need any convention, but putting this older person's convention in place is the hard lever we need to get to where we need to be.

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In two generations time we will forget that we ever needed it.

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But unless we get this boost, things will just keep going the way they're going and we need to empower ourselves.

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I love that so much.

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That is the message I think that we all need to hear and pass over the microphone To me.

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You know the unleashing of the energy and contribution of people like you, bringing it back into the conversation, back into our communities, our families, our societies.

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I can see so much energy, so much thoughtfulness, an extraordinary amount of lived experience and wisdom that we're losing by not hearing from you.

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What do you see if there's a convention and it really gets embedded into the hearts and minds and cultures of our societies?

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It's an interesting one.

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There's a few ways that I could answer that the technical way and the human way.

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So maybe I'll start with the technical way first and see how we go.

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I'll give you a personal anecdote.

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I, in 1965, was born in a mother and baby home, an institution, and adopted out.

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We had a lot of political unrest so we had internment where people could be put in prison, essentially indefinitely, as a political prisoner, and I was raised in that world, world where human rights were something that I used to watch on TV.

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I didn't feel I was part of that life.

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I didn't feel entitled to human rights because if there was a pile I was at the bottom of it.

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Being born out of wedlock, as they would say back, I was a mixed religion, so I had every disadvantage poverty, you name it, institutional orphanage, all the rest.

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My mother had to give me away because there was no support socially and even though we were something of a secular country in Northern Ireland, there was no room for her to have a child and she had to give me away and I bear no grievance for that.

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That was the context.

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Now I find I'm coming to the end of my life and my children are going to have to do the same.

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Because we don't value our older people, we don't value keeping them in the community, we don't recognize the pain inflicted on families who cannot, because of structural issues and failure to support carers, we cannot keep our older people living at home because then we can't pay our bills.

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That's the type of systemic lack of support for the carers, lack of support for the families, that forces our adult children to have.

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My children will have to give me away again and put me into a locked situation During COVID.

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You can't get out, you can't get in.

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It's astonishing to me that that's perceived as normal and sometimes they're advertised almost as a luxury option.

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If you look at dementia, the number one contributor to decline in dementia symptoms and the trajectory of the disease is lack of social contact.

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And what is the first thing that our society encourages us to do?

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Take a person out of their community and isolate them with some strangers.

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And this is really what I'm fighting against, because this is the poster child, for I have no voice, because, even if I say no, I don't have capacity, I'm going anyway.

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If I object, if I shout, I'm medicated because I'm clearly disturbed, because I've got to mention.

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This is a one-way street for people and it's not just affecting the older people.

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All of our extended families have to live with the guilt, the shame, the pain.

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It's exactly like the stolen generations and the forgotten generations that we had, who were institutionalized in residential schools.

00:23:41.103 --> 00:24:03.968
All of that is still happening, except it's older people, and I just can't quite understand why nobody finds this appalling, except for us, and I would just beg please reconsider, and a convention will be the big stick that we need to fight, not only for our own rights, and this isn't a completely selfish endeavor.

00:24:03.968 --> 00:24:11.112
I look at my family, I look at my adult children and my grandchildren and I see the fear in their eyes.

00:24:11.112 --> 00:24:13.943
What are we going to do with mum and Alana?

00:24:13.943 --> 00:24:15.508
We need to change this.

00:24:15.508 --> 00:24:17.270
We can't live like this.

00:24:17.270 --> 00:24:35.604
We're also, I was at a conference recently and this is a bit of a rabbit hole, but um, at the conference we had a researcher talking about moral injury for um, residential age care providers, staff, and that's something that's not looked at too often.

00:24:35.924 --> 00:24:54.664
Yes, but the very thought, the very action of working in residential age care was having a really detrimental health on the mental health of the staff and they were looking for ways to pick each other up oh, let's get some fun activities, debriefs and that sort of thing.

00:24:54.664 --> 00:25:07.355
And as I was listening, it occurred to me that there is no actual way for someone to go and work in premises that they feel in their guts is morally reprehensible.

00:25:07.355 --> 00:25:15.480
How do you go home feeling good at the end of the day, knowing that you have gone into an institution that really shouldn't exist?

00:25:15.480 --> 00:25:17.905
Now I would say yes, there is a place.

00:25:17.905 --> 00:25:23.586
Palliative care, absolutely Short-term respite care, certainly in dementia.

00:25:24.307 --> 00:25:27.602
Many of us can get aggressive, dangerous.

00:25:27.602 --> 00:25:30.752
That's a very short term part of dementia.

00:25:30.752 --> 00:25:32.740
So why are we locked away forever?

00:25:32.740 --> 00:25:39.073
No one ever comes out of a locked ward, but those symptoms can only last roughly six months.

00:25:39.073 --> 00:25:46.213
Organically, the disease will take away your ability to be violent or aggressive or verbally or whatever.

00:25:46.213 --> 00:25:54.653
So that big stick to really just push back on this systemic exclusion of people.

00:25:54.653 --> 00:26:17.267
And I have a bit of a saying when you turn 65 and you're diagnosed with dementia, in turn you're ostracized, you're dehumanized, then you're institutionalized, you're homogenized and collateralized, and none of those are compatible with human rights under the most fundamental of my understanding.

00:26:18.248 --> 00:26:33.211
If we found a better way, a more desirable, humane, embracing way, inclusive way to live with older people in our lives and people living with dementia, what would it look like and what would come from it?

00:26:33.780 --> 00:26:59.820
Well, I'd probably come back to that very fundamental disconnect between what we as humans with our little family, groups, bigger groups, communities where we look after each other, and back when Charles Darwin came with his theory of evolution, where you had to fight or die, and actually, in nature, when you study it, it's the animals and plants that collaborate, that do best.

00:26:59.820 --> 00:27:05.920
Yet we still live in this sort of Darwinian the strongest is the most important.

00:27:05.920 --> 00:27:15.194
So we're drifting away in our community structures into believing this, that we are individuals, we're not a group.

00:27:15.194 --> 00:27:33.701
And this push for individuality is actually resulting, in my experience as a granny, in the increase depression because our minds are not consistent with our souls, our activities are not consistent with our values, and that, of course, comes through.

00:27:33.701 --> 00:27:36.553
And why can't we find anyone who wants to work in aged care?

00:27:36.553 --> 00:27:40.945
Because it's not consistent with our human values.

00:27:41.487 --> 00:27:46.317
But let's say we lived in a world where it was open to us as a choice.

00:27:46.317 --> 00:27:58.765
I'm not telling anybody how they should be, I'm an advocate for choice and so many families, if they had that choice, would work with the older people.

00:27:58.765 --> 00:28:03.130
Ageing would be part of the life course, the circle of life.

00:28:03.130 --> 00:28:07.415
How would it feel to be allowed to live with dementia.

00:28:07.415 --> 00:28:27.102
What if we had room for me to just live with dementia and die with dementia in my lane, without having to be managed here, there or everywhere, and the freedom that I felt in my heart from just being able to be different, yes, going down and just being allowed to live and die as who I am.

00:28:27.102 --> 00:28:39.580
And imagine if we were in a world where families, as well as being supported to have children, were supported to care for their older people in terms of social security, carers allowances.

00:28:39.580 --> 00:28:53.436
Imagine if we change social security to support carers to be able to survive in this world and support our older people to live and die the way they choose with freedom.

00:28:53.779 --> 00:29:02.352
As I listen to you, I really cannot bear the thought that we wouldn't hear your voice and that we wouldn't hear your insights, teresa.

00:29:02.352 --> 00:29:12.470
And that we wouldn't hear your insights, teresa, as you were talking at the beginning and saying you know, we have no voice and we're not given a place to speak just this short and precious conversation.

00:29:12.470 --> 00:29:21.343
It feels really unbearable to me that we wouldn't hear your voice and the voices of so many others, because you have so much to share, so much to help us to reclaim our own humanity in the process.

00:29:21.343 --> 00:29:26.522
I'm grateful that you took the time to speak with me and to share with those who will be listening.

00:29:26.984 --> 00:29:37.852
If I had anything to say to the people listening, it would be fight back, say no, shout, get together, let's find ways to support each other.

00:29:37.852 --> 00:29:41.724
This is not about oh, we don't have a treaty, we've got a different system.

00:29:41.724 --> 00:29:43.428
This is deeper than this.

00:29:43.428 --> 00:29:48.164
This is not about whether a treaty will be applicable or not.

00:29:48.164 --> 00:29:49.528
We can fix that.

00:29:49.528 --> 00:29:53.463
We just need to change hearts and minds that we're not irrelevant.

00:29:53.463 --> 00:29:54.626
Let's fight back.

00:29:54.626 --> 00:29:55.730
Let's fight hard.

00:29:55.730 --> 00:29:56.672
Unnoisy.

00:29:57.220 --> 00:30:04.885
I'm completely with you and in every community, with our wonderful people like you, who can bring us back home to our deepest selves.

00:30:04.885 --> 00:30:06.250
Wouldn't that be amazing?

00:30:06.250 --> 00:30:16.188
You give me hope, because knowing that you're speaking in this way and working on this convention, with all the pathos and the understanding you bring to it, that gives me hope.

00:30:16.188 --> 00:30:17.230
So thank you.

00:30:17.440 --> 00:30:18.846
Thank you for inviting me.

00:30:18.846 --> 00:30:20.465
It was my pleasure.

00:30:20.465 --> 00:30:21.059
Thank you a lot.

00:30:21.059 --> 00:30:21.779
Thank you, thank you.

00:32:17.916 --> 00:32:23.749
So first I'll just start and welcome you, because I'll have made a little intro and I'll say welcome, teresa.

00:32:23.749 --> 00:32:27.017
It's wonderful to have you on the podcast with me today.

00:32:28.526 --> 00:32:29.307
Thank you, alana.

00:32:29.307 --> 00:32:31.111
It's my pleasure to be here.

00:32:31.111 --> 00:32:33.375
I'm in Sydney, australia.

00:32:33.375 --> 00:32:41.666
I'm on the land of the Sarawal original people and I'm grateful and pay my respects to the original people of the land that.

00:32:41.666 --> 00:32:43.090
I'm living on today.

00:32:43.791 --> 00:32:44.252
Beautiful.

00:32:44.252 --> 00:32:48.587
I really love that and love that we can honour that in this conversation.

00:32:48.587 --> 00:33:04.017
Thank you, and Teresa, I'm going to invite you to introduce yourself to those who are listening to us, and then we'll just talk about the different things that would be interesting to discuss today.

00:33:04.017 --> 00:33:07.669
So please tell us a bit about yourself, whatever feels right to bring into the space.

00:33:09.010 --> 00:33:09.612
Hello Alana.

00:33:09.612 --> 00:33:11.236
My name is Teresa Flavin.

00:33:11.236 --> 00:33:19.897
I'm originally born in Northern Ireland in the 1960s, which was a colourful place to be in those times.

00:33:19.897 --> 00:33:25.713
I'm now in my late 50s I can't ever quite remember exactly.

00:33:25.713 --> 00:33:29.605
I have five adult children and eight grandchildren.

00:33:30.448 --> 00:33:57.718
I was diagnosed with younger onset dementia when I was in my early 40s, which was a big shock to me from an external perspective, until I got over the shock and started to try to integrate into society again and just live a normal life with a little bit of support.

00:33:57.718 --> 00:34:11.614
And I was very crushed to find out that the label of dementia was enough to put me to the proverbial wastebasket of life and I wasn't happy happy with that.

00:34:11.614 --> 00:34:22.887
So I moved into the advocacy space to speak out a little bit and slowly but surely I realized that it wasn't just dementia that was setting me apart.

00:34:22.887 --> 00:34:44.918
It was this whole concept of ageism in general and how that relates to society's view of older people and utility and consumption and a whole lot of things around that that really it really startled me to see just how systemic this was.

00:34:44.918 --> 00:34:48.695
This wasn't people in the community calling me names.

00:34:48.695 --> 00:34:56.175
This was something that was baked into our world and I want to change that.

00:34:58.987 --> 00:35:12.195
Yeah, that makes so much sense to me because we often think of dementia as something that happens to older people and that's already something that's invisible in our society.

00:35:12.195 --> 00:35:19.798
So much of the time we shut people away, older people away, and it's also something we don't want to think about.

00:35:19.798 --> 00:35:31.672
So I'm really interested in the insights that you have around, how you made the connections, because you experienced this at a younger age.

00:35:31.672 --> 00:35:34.280
You're not living in a long-term care home.

00:35:34.280 --> 00:35:37.791
You know the kinds of things where we expect to see people living this dimension.

00:35:37.791 --> 00:35:39.876
So I think also, we don't.

00:35:39.876 --> 00:35:44.869
We don't expect to hear their voices on this subject at all.

00:35:44.869 --> 00:36:03.213
Yeah, that's really and I and I'm just listening to what you just said um, how has it been for you to raise the how, as you come to this advocacy and wanting to give voice to this and and what you are seeing as a systemic discrimination and marginalization?

00:36:03.213 --> 00:36:04.396
I really hear that.

00:36:04.396 --> 00:36:06.045
That really resonates when you say it.

00:36:06.045 --> 00:36:09.291
Um, what, uh, what have you discovered?

00:36:11.094 --> 00:36:14.820
I've discovered that, that there is no room for my voice.

00:36:14.820 --> 00:36:18.233
My voice is not welcome.

00:36:18.233 --> 00:36:32.199
We live in a sort of in the Western society we talk a lot about consumer involvement or patient and public involvement and collaboration and co-design.

00:36:32.199 --> 00:36:49.556
We have many, many words for this sort of nebulous concept of the person with a specific condition leading or participating actively in development of products or services and policies and things.

00:36:49.556 --> 00:36:51.719
Products or services and policies and things.

00:36:51.719 --> 00:36:57.242
The reality of that is quite different, I might say.

00:37:01.784 --> 00:37:15.751
For example, our advocacy organisations will receive a great deal of government funding and they promote outwardly the human rights of older people and people living with dementia, but they're certainly not employing us.

00:37:15.751 --> 00:37:36.510
We are an arm's length advisory committees where we're again segregated, set off to the side with no power or influence, where our voices are rolled up and packaged only to be virtually ignored because we're not embedded into these organizations.

00:37:36.510 --> 00:37:44.574
So there's a lot of funny business going on, a lot of optics going on, and that can be very demoralizing.

00:37:44.574 --> 00:38:13.295
And if I were to say one thing about advocacy and activism for the human rights of people living with dementia and all older people, I would say demoralizing is where I'm at with the lack of change and fighting the vested interests of an industry that is dedicated and predicated on the fact that nothing changes, because then there's no need for an organization.

00:38:13.295 --> 00:38:16.010
If things are good is very difficult.

00:38:19.106 --> 00:38:23.036
That's hard to hear but it has the ring of deep truth to it.

00:38:23.036 --> 00:38:32.155
But it makes the struggle around defining it around human rights very poignant as well.

00:38:32.155 --> 00:38:46.775
To bring it back to the inalienable human rights of the individual, but also to challenge the system that exists through that lens and the right to self-determination.

00:38:46.775 --> 00:38:48.056
I have a question here about that.

00:38:48.056 --> 00:38:51.407
But now, actually, it means even more to me hearing what you're saying.

00:38:51.407 --> 00:39:05.795
The right to self-determination is a universal human right, which means all people are free to determine their political status and to pursue their economic, social and cultural development.

00:39:05.795 --> 00:39:21.735
In the context of what you've been experiencing and recognizing the demoralization that you're feeling, what does that right to self-determination mean for older persons and people living with dementia?

00:39:21.735 --> 00:39:36.153
How does that play itself out, not just in the advocacy and the policies and the sort of corporatization, as you're talking about, of the whole issue and lived realities, but also in terms of how we think about human rights?

00:39:36.153 --> 00:39:37.056
What does that mean?

00:39:39.005 --> 00:39:40.228
Well, if I was to.

00:39:40.228 --> 00:39:47.677
I'm often asked the question, ilana, why do older people need a specific convention just for them?

00:39:47.677 --> 00:39:57.536
Don't they already have the human rights, as you say, captured and embedded in our US constitution, you know, and various international treaties?

00:39:57.536 --> 00:40:03.416
And I used to think that too until I found myself in this position.

00:40:03.416 --> 00:40:14.916
And if I were to answer the question of why do older people need this specific protection in one word, I would probably point to institutionalisation.

00:40:16.284 --> 00:40:38.820
So over the past, maybe since World War II, our Western society in particular, have worked very hard on deinstitutionalisation as a human rights matter for all, the way from mother and baby homes, residential schools, asylums, orphanages, all of those types of things.

00:40:40.306 --> 00:40:52.721
And the generation that put the work and the power behind those initiatives to deinstitutionalize were the people that are now older people.

00:40:52.721 --> 00:40:58.094
Today, suddenly, we're waking up realizing we've done all of this work.

00:40:58.094 --> 00:41:03.510
It's transformational, but we're going into an institution ourselves.

00:41:03.510 --> 00:41:36.327
And were you to just give only one example, that would be the one for me, because we're now being groomed to expect institutionalization and we're being groomed to say yes to institutionalization in a way to avoid the guilt of our burden on our families and our descendants and the economy of our burden on our families and our descendants and the economy.

00:41:36.327 --> 00:42:11.340
And that is really where it gets very sinister for me, as it were, because we're in this position where your human rights are only as useful as your ability to claim and defend them and when you become older, potentially with more chronic health problems, if you get dementia, your ability to independently claim and defend those rights becomes so diminished and systemically you're just excluded out of life until eventually you're living in the equivalent of a car park somewhere out of time.

00:42:14.146 --> 00:42:34.317
And it's such a deeply important part of human rights, isn't it that participatory piece where communities and individuals should be able to participate in the claiming, defending, protection, enjoyment of their human rights and be consulted and counted in their own lives?

00:42:34.317 --> 00:42:40.490
And can we talk a little bit about your thoughts and your insights around?

00:42:40.490 --> 00:42:53.565
The limitations on the rights of older persons to exercise their choices are frequently the result of stereotyped assumptions about capacity.

00:42:53.565 --> 00:43:09.585
As you're saying, very rarely do we talk about their desires or their needs as defined by them, and so how do ableism and ageism limit the ability to have your choices and decisions heard and respected?

00:43:09.585 --> 00:43:19.541
You've talked about it a little bit, but I think, in terms of the ability to participate in the articulation of it and the claiming, as you say, of your rights, how do you?

00:43:21.706 --> 00:43:29.456
This presents in so many ways, so maybe I'll just try and narrow that down a little bit.

00:43:31.126 --> 00:43:33.635
I'll give you a very personal example.

00:43:33.635 --> 00:43:40.675
When you're diagnosed with dementia, the first thing you're told is to get your affairs in order.

00:43:40.675 --> 00:43:44.195
You're not offered therapies.

00:43:44.195 --> 00:43:52.574
You're not offered occupational therapy, speech therapy, things that will help you maintain your function as long as you can.

00:43:52.574 --> 00:43:54.672
You're told to get your affairs in order.

00:43:54.672 --> 00:44:00.077
So, obediently, I tried to get my affairs in order.

00:44:00.077 --> 00:44:21.436
So I looked at an advanced care directive and when I looked at it it was a principles-based pro forma document that comes from our state government and when I read it it was a list of six principles that I would find, six situations and I could tick.

00:44:21.436 --> 00:44:24.360
Would I find this bearable or unbearable?

00:44:24.360 --> 00:44:34.085
When I read the six symptoms, they were the symptoms of dementia symptoms.

00:44:34.085 --> 00:44:34.947
They were the symptoms of dementia.

00:44:34.967 --> 00:44:44.052
So when I read that and I thought okay, so I'm being expected to tell someone if I find these things bearable or unbearable, but with no potential outcome, it doesn't matter.

00:44:44.052 --> 00:44:50.952
These are the symptoms of dementia, the most prevalent killer of women in Australia.

00:44:50.952 --> 00:44:58.420
So when you try to make an advanced care directive, essentially all you can say is that dementia is unbearable.

00:44:58.420 --> 00:45:05.257
So I looked at that and I thought well, this is very difficult for me.

00:45:05.257 --> 00:45:12.304
Dementia does, as everyone knows, it impacts your memory and your functionality.

00:45:12.304 --> 00:45:23.300
So for me to try and transfer the symptoms of dementia and project to potentially dying of something else, it was too much of an intellectual stretch.

00:45:23.300 --> 00:45:29.577
So I called a helpline to ask for further information.

00:45:29.577 --> 00:45:31.985
I didn't want support, I just wanted information.

00:45:31.985 --> 00:45:40.297
I wanted to map what the government had given me to what the advocacy organizations would advise.

00:45:41.545 --> 00:45:53.213
And when I called them, my experience was, in the second sentence, to have my capacity questioned Do you have the capacity to undertake that?

00:45:53.213 --> 00:45:55.413
Because that can be challenged.

00:45:55.413 --> 00:46:14.911
And that was quite a shock, because I was having quite a lucid conversation, asking for information, not asking for guidance, so only to find that the advocacy organization wouldn't send me any information unless I gave them the number of another human being that they could call.

00:46:14.911 --> 00:46:38.735
They subsequently called a service provider who had met me once in order to verify my capacity to receive this information because in their opinion, I was being secretive by wanting the information myself and not having a meeting with my extended family hosted by them.

00:46:38.735 --> 00:47:03.067
And that went on until, ultimately, the advocacy organization called me again and told me that, yes, advanced care directive, as it's called here in Australia, probably wasn't a good idea because my capacity was compromised in their opinion, based on an introductory telephone call.

00:47:03.067 --> 00:47:18.590
And the conversation very, very, very quickly went from me asking for information to them giving me information on do not resuscitate instructions.

00:47:19.811 --> 00:47:30.771
This was not my idea at all and I find that whole situation really it broke my spirit, ilana.

00:47:30.771 --> 00:47:42.967
It absolutely broke my spirit because you're forced to do something, you're guilted, you're shamed into making arrangements really for the convenience of the people around you.

00:47:42.967 --> 00:47:55.679
There was no convenience in that situation for me, with absolutely no concept or no acknowledgement of just how nihilistic this situation actually was.

00:47:55.679 --> 00:48:03.264
So when we're talking about the ability to make a decision, it's almost as though I don't exist.

00:48:03.264 --> 00:48:04.728
I've been unpersoned.

00:48:06.090 --> 00:48:15.275
Nobody will have a conversation with me unless there's another person present who's real will have a conversation with me unless there's another person present who's real, because I'm essentially a ghost in the world.

00:48:15.275 --> 00:48:27.853
I go to the doctor's office, they talk to the person beside me, because I'm already a ghost, and on and on, and I'm still reasonably functional and I've seen how it goes.

00:48:27.853 --> 00:49:02.697
If you have, let's say, english as your second language here in an English-speaking country, if you have different beliefs, different cultures, different sexuality, all of those intersections make you even more of a ghost and I'm starting to identify as a blue orb, because I really don't feel as if there's room for me in the world and I'd like, I'd like our world to make room for us yeah, absolutely.

00:49:04.380 --> 00:49:24.280
And yeah, that's so painful, teresa, I find that really painful because you're so thoughtful and you're so lucid and, frankly, you know, I think this is something that we see with ageism and ableism.

00:49:24.280 --> 00:49:49.954
I mean, these are words that have deep meaning but we use them, I think, pretty pro forma a lot of the time, and you're so right that there are so many intersections in life and so many different identities that make you less and less visible and less and less of a person in our society.

00:49:49.954 --> 00:50:41.184
And I think that what you're describing is sadly too familiar to me, because I think but if I add to it the elements that you're talking about, where you don't even have the respect or the ability to speak for yourself, even have the respect or the ability to speak for yourself because of capacity, I think you know that's excruciating to hear from you, but also alarming if you think about what that means for older people who, even if they don't have dementia, even if someone doesn't have dementia, even if they don't have dementia, even if someone doesn't have dementia, as people age, are seen as less and less capable, as less and less able to speak for themselves and to think through all of these issues.

00:50:41.184 --> 00:50:55.074
And so I think that it's extraordinarily important what you're saying, because there is dementia as you're experiencing and living it and dealing with what the assumptions people are making.

00:50:55.074 --> 00:51:13.081
But there's also an assumption too around gender, around being a newcomer, around not having English as a first language, around just coming from any historically marginalized group, coming from any historically marginalized group.

00:51:16.684 --> 00:51:42.856
The sort of diminution of attention that's paid to these intersections is really important to pay attention to, because I think when I was reading some of the things that you had said in other conversations, it really struck me when you were talking about you always said older persons and those living with dementia, or older people and those living with dementia, or older people and those living with dementia really struck me because I thought this is we actually often treat people like they don't have the capacity to speak for themselves as they age.

00:51:42.856 --> 00:51:53.519
So you have a powerful window into that othering and that diminishing, which I think is really important.

00:51:53.519 --> 00:52:10.289
But I think and I think it's so interesting to me and important that you also also that you talk about it in terms of systemic discrimination and human rights that that's very interesting to me, teresa, and I want to ask you it's not part of our official list of questions here.

00:52:10.289 --> 00:52:17.246
But but it's very interesting to me because I think that, because I really want to ask you how not everybody comes to that.

00:52:17.246 --> 00:52:18.409
I guess that's what I'm thinking.

00:52:18.809 --> 00:52:34.940
Not everyone has this experiencing of othering, of not being heard, of having their voice and their wishes disregarded and sees it as a systemic voice and their wishes disregarded and sees it as a systemic, a form of systemic discrimination.

00:52:34.940 --> 00:52:40.849
So I'm very interested to hear from you how did you come?

00:52:40.849 --> 00:52:41.452
How do you come to this?

00:52:41.452 --> 00:52:47.168
I think it's most unusual to understand this as systemic and not just your personal experience of a really difficult and challenging diagnosis.

00:52:47.168 --> 00:52:47.909
So I wonder, how did that happen?

00:52:47.909 --> 00:52:50.733
Challenging diagnosis, so I wonder, how did that happen?

00:52:52.255 --> 00:52:54.739
Well, it happened organically, I guess.

00:52:54.739 --> 00:53:11.157
And as I started to hit these same systemic roadblocks of no matter what sort of service I wanted or anything that I needed or anything I had to sign had to be co-signed once dementia was acknowledged.

00:53:11.157 --> 00:53:14.106
And I hit the same thing again and again.

00:53:14.106 --> 00:53:21.646
And but at no point was anybody actually doing anything to establish if I had capacity or not.

00:53:21.646 --> 00:53:27.264
There was no intervention, nobody was saying well, you realize the implications of this.

00:53:27.264 --> 00:53:38.800
There was no effort, it was just a straightforward assumption and it was very clear that it was just expedient to get that substitute, that cosigner.

00:53:38.800 --> 00:53:47.579
It just made business as usual a lot easier, without having to do a little detour to accommodate someone who's different.

00:53:48.666 --> 00:53:54.427
And I became aware of this organization called Dementia Alliance International.

00:53:54.427 --> 00:54:07.936
And Dementia Alliance International and I usually call them DAI are an organization founded by and completely comprised of people living with dementia.

00:54:07.936 --> 00:54:12.041
There's no one speaking for us, it's just us.

00:54:12.041 --> 00:54:21.909
We're not funded by anybody, we have no agenda and we offer each other peer support and that can come, it's usually by Zoom.

00:54:21.909 --> 00:54:40.360
It's an international thing and as I joined that, I was very reluctant to do peer support because I had it in my head that I'm going to have to listen to a whole lot of hard luck stories and I thought I don't have the resilience to uplift anyone else.

00:54:40.565 --> 00:54:41.728
I'm struggling myself.

00:54:41.929 --> 00:54:44.900
So I had a really inverted view of it.

00:54:45.521 --> 00:55:05.458
But what I discovered because there was no professional there intervening or casting aspersions or managing us that it was actually very, very uplifting and what we were doing was giving each other, yes, we would say our this happened, but then we would come back with how we got through it.

00:55:06.005 --> 00:55:08.911
So it actually was a sharing of solutions more than problems.

00:55:08.911 --> 00:55:25.208
But as I spoke with tens, hundreds, thousands of people all over the world experiencing the same things that were not there, had nothing to do with them as a personal human being.

00:55:25.208 --> 00:55:47.936
It all had to do with the context and the cohort and the age group and the government, the social security systems, the healthcare systems and these layers and layers and layers that were just pushing down on people, pressuring them to move out of society and into an institution.

00:55:47.936 --> 00:56:30.856
It was really it became almost sinister across the world this consistent pattern of marginalizing people based on their perceived whether they were be a consumer, a taxpayer, a revenue generator, whatever that might be in whatever context, whatever that might be in whatever context and it was I couldn't quite believe the scale of what I was looking at until I started listening to all of these people with very different situations, but all with the same story trying to find room for themselves in societies that had no room for them.

00:56:36.706 --> 00:56:54.639
Yeah, and again it comes back to a systemic, endemic and systemic problem, and problem feels like the wrong word because there's more intentionality than that.

00:56:55.967 --> 00:57:00.737
It's not just an accident of delinquency or neglect.

00:57:01.485 --> 00:57:08.291
There's actually a system that is excluding for expedience, for all of the reasons you've said.

00:57:09.307 --> 00:57:20.614
And so I want to come back for a moment to this UN convention to protect and promote the rights of older people, and you talked about it a little bit.

00:57:21.146 --> 00:58:00.213
But when you talk about the scale, when you talk about sort of the global reality of a whole vibrant, alive group of people in our midst whom we love, these aren't statistics, these are people that we love, live amongst us, who are precious to families and to communities when you think about it, and you think about it globally, it does make a convention, even though conventions feel very far away from us and human rights treaties feel pieces of paper.

00:58:00.213 --> 00:58:00.855
But it does.

00:58:00.855 --> 00:58:19.652
When you think about the scale of it, it does suggest to me that there is a real need to address the systemic nature of it, the human rights nature of it, to see the people who need to participate in their own self-determination and rights and lives and livelihoods.

00:58:19.652 --> 00:58:34.010
So I'd love to hear from you a little bit more about why a convention to promote and protect the human rights of older people and people living with dementia, why it's important, why does it matter to you?

00:58:34.010 --> 00:58:36.291
What are your thoughts about it?

00:58:45.425 --> 00:58:46.025
are your thoughts about it?

00:58:46.025 --> 00:59:08.472
Well, when I attended the United Nations open sorry, a bit fumbly on this the open-ended working group on aging, and they had spent 13 years talking with no action and that to me was probably the biggest acknowledgement that older people are not a priority 13 years of nothing.

00:59:08.472 --> 00:59:21.900
And I started asking around when I was there, you know and I guess because I have dementia I don't have that sense of, oh, this person's too important to talk to I kind of missed all of that.

00:59:21.900 --> 00:59:38.481
So I was just approaching people, you know, in the breaks and what was very interesting to me was that when I asked questions like, how did the disabled community manage to get themselves a profile?

00:59:38.481 --> 00:59:43.565
How did Indigenous peoples, peoples, children, how did that happen?

00:59:43.565 --> 01:00:00.090
And why are we stalling with older people, and their response was quite light-hearted in that because, um, you're too nice, you're too accepting, we're stoic, we're everything that society wants us to be the stoic, stiff upper lip we put up with it.

01:00:00.090 --> 01:00:03.125
That society wants us to be the stoic, stiff upper lip, we put up with it.

01:00:03.125 --> 01:00:08.085
We don't want to be a nuisance, don't want to be a burden, all of this.

01:00:08.085 --> 01:00:21.739
And I was quite appalled because I was actually the first person ever with dementia to turn up to the United Nations open-ended working group on aging.

01:00:22.380 --> 01:00:33.771
There are like 400 million people in the world living with dementia and I'm sure that's probably a very big understatement and no people.

01:00:33.771 --> 01:00:36.813
There were no older people speaking.

01:00:36.813 --> 01:00:39.277
There were organisations speaking for us.

01:00:39.277 --> 01:00:52.532
Some of them comprised of older people, but privileged older people, and I mean that with the greatest of respect, they weren't the people that this was going to affect.

01:00:52.532 --> 01:01:16.867
And that's where the wheels really come off the wagon, when you see we have these organizations working for us but not with us, and you lose a lot of veracity in that transfer process, because there is nothing more moving than a person living with dementia telling you I don't want to go to an institution, please.

01:01:16.867 --> 01:01:19.427
I don't want to go to an institution, please.

01:01:19.427 --> 01:01:44.094
That's quite different to an academic discussing the ins and outs of a nebulous or a disincarnate situation, and I found that that was very moving being there, and it was also very moving looking at the responses of the decision makers that were there.

01:01:44.753 --> 01:01:56.996
So really, we need to work harder, work better, and us older people need to really get across that this is not good enough.

01:01:56.996 --> 01:01:59.396
You know packing us off.

01:01:59.396 --> 01:02:00.518
You know, get nicked.

01:02:00.518 --> 01:02:01.617
No, thank you.

01:02:02.478 --> 01:02:07.659
And understanding that, yes, we will be challenged, but plan for that.

01:02:07.659 --> 01:02:11.300
You know we are not powerless individuals.

01:02:11.300 --> 01:02:16.641
People treat us as if we are, so we start to believe it.

01:02:16.641 --> 01:02:26.603
We start to feel vulnerable and weak when, when we actually do have social clout, we're just not brandishing it in the way that we need to.

01:02:26.603 --> 01:02:30.043
So I would say the situation is not hopeless.

01:02:30.043 --> 01:02:54.211
But unless we get a really big, blunt instrument that can be used to make our societies change so that we are equal all the way through the life course, not just important while we are generating cash or whatever your bar is, we need the full life course.

01:02:54.211 --> 01:03:07.518
In an ideal world, we wouldn't need any conventions, but putting this older person's convention in place is the hard lever we need to get to where we need to be.

01:03:07.518 --> 01:03:12.777
In two generations' time we will forget that we ever needed it.

01:03:12.777 --> 01:03:20.952
But unless we get this boost, things will just keep going the way they're going and we need to empower ourselves.

01:03:23.065 --> 01:03:24.391
I love that more than you know.

01:03:24.391 --> 01:03:25.775
I love that so much.

01:03:25.775 --> 01:03:41.597
That is the message I think that we all need to hear loudly and clearly and and pass over the microphone, you know, yeah, yeah, and so let's, so you know I could speak to you for another hour.

01:03:41.597 --> 01:03:42.971
I have so many questions of my own.

01:03:42.971 --> 01:03:44.070
I have two questions.

01:03:44.070 --> 01:03:51.070
One is the one that I'm supposed to ask you, which is okay.

01:03:51.070 --> 01:04:05.802
So if we get and I'm going to ask you because I think it's an interesting question, given what you're saying which is, if we get, if, when we get the convention, what better world, what changes?

01:04:06.865 --> 01:04:07.710
It's not utopia.

01:04:07.710 --> 01:04:12.737
Let's not pretend that all of the systems that exist don't change overnight.

01:04:12.737 --> 01:04:18.735
And some of them will take generations, and we know that.

01:04:18.735 --> 01:04:21.840
And some of them will take generations, and we know that.

01:04:21.840 --> 01:04:45.018
But in terms of envisaging to me, you know, the unleashing of the energy and contribution of people like you, bringing it back into the conversation, back into our communities, our families, our societies, I can see so much energy, so much thoughtfulness, an extraordinary amount of lived experience and wisdom that we're losing by not hearing from you.

01:04:45.018 --> 01:04:54.639
What do you see if there's a convention and it really gets embedded into the hearts and minds and cultures of our societies.

01:04:57.467 --> 01:04:58.572
It's an interesting one.

01:04:58.572 --> 01:05:07.835
There's a few ways that I could answer that the technical way and the human way so maybe I'll start with the technical way first and see how we go.

01:05:07.835 --> 01:05:13.536
I'll give you a personal sort of anecdote.

01:05:13.536 --> 01:05:22.778
I, in 1965, was born in a mother and baby home, an institution, and adopted out.

01:05:22.778 --> 01:05:37.331
We had a lot of political unrest so we had internment where people could be put in prison, essentially indefinitely, as a political prisoner with no trial.

01:05:37.331 --> 01:05:51.340
We had human rights abuses of every type in Northern Ireland and I was raised in that world where human rights were something that I used to watch on TV.

01:05:51.340 --> 01:05:54.449
I didn't feel I was part of that life.

01:05:54.449 --> 01:06:01.539
I didn't feel entitled to human rights because if there was a pile I was at the bottom of it.

01:06:02.666 --> 01:06:08.559
Being born out of wedlock, as they would say, back.

01:06:08.559 --> 01:06:16.210
I was a mixed religion, so I had every disadvantage poverty, you name it, institutional orphanage, all the.

01:06:16.210 --> 01:06:37.907
My mother had to give me away because there was no support socially and even though we were something of a secular country in Northern Ireland, there was no room for her to have a child in that situation and she had to give me away and I bear no grievance for that.

01:06:37.907 --> 01:06:39.413
That was the context.

01:06:39.413 --> 01:06:45.284
Now I find I'm coming to the end of my life and my children are going to have to do the same.

01:06:45.284 --> 01:07:03.585
Because we don't value our older people, we don't value keeping them in the community, we don't recognise the pain inflicted on families who cannot because of structural issues and failure to support carers.

01:07:03.585 --> 01:07:09.259
We cannot keep our older people living at home because then we can't pay our bills.

01:07:09.259 --> 01:07:20.092
That's the type of systemic lack of support for the carers, lack of support for the families, that forces our adult children to have.

01:07:20.092 --> 01:07:38.420
My children will have to give me away again and put me into a locked situation with strangers, and I can tell you that the the violence and abuse statistics in those locked situations are startling.

01:07:38.420 --> 01:07:48.157
Australia has a low population and we have 50 sexual assaults every week in these residential care facilities.

01:07:48.157 --> 01:07:59.396
My guess is that most of these occur in these locked situations where you can't get out, and during COVID you can't get out, you can't get in.

01:07:59.396 --> 01:08:16.431
It's astonishing to me that we still are living in this, that that's perceived as normal, and sometimes they're advertised almost as a luxury option.

01:08:16.452 --> 01:08:20.600
Well, what's memory care about being taken away from your family?

01:08:20.600 --> 01:08:32.060
If you look at dementia the number one contributor to decline in dementia symptoms and the trajectory of the disease is lack of social contact.

01:08:32.060 --> 01:08:36.994
And what is the first thing that our society encourages us to do?

01:08:36.994 --> 01:08:41.837
Take a person out of their community and isolate them with some strangers.

01:08:41.837 --> 01:08:51.536
It takes 17 days for someone's mental health to break without sensory input and stimulation.

01:08:51.536 --> 01:09:02.814
So we're putting someone from a world of colour and sound and livelihood into a beige area with nothing to look at, nothing to see.

01:09:02.814 --> 01:09:18.574
And then we call their 17 days in, we call their mental health breakdown, the behaviors and psychological aspects of dementia, and we get some medicine, keep us quiet.

01:09:19.615 --> 01:09:28.313
And if this sounds gloomy and like something out of the 1920s, like an Oliver Twist story, you'd be right.

01:09:28.313 --> 01:09:43.296
And this is really what I'm fighting against, because this is the poster child, for I have no voice Because even if I say no, I don't have capacity, I'm going anyway.

01:09:43.296 --> 01:09:52.096
If I object, if I shout, I'm medicated because I'm clearly disturbed because I've got dementia.

01:09:52.096 --> 01:09:58.033
This is a one-way street for people and it's not just affecting the older people.

01:09:58.033 --> 01:10:03.965
All of our extended families have to live with the guilt, the shame, the pain.

01:10:03.965 --> 01:10:13.600
It's exactly like the stolen generations and the forgotten generations that we had, who were institutionalized in residential schools.

01:10:13.600 --> 01:10:32.398
All of that is still happening, except it's older people, and I just can't quite understand why nobody finds this appalling, except for us, and I would just beg, please, please, please, reconsider.

01:10:32.398 --> 01:10:43.640
Yeah, and at a convention will be the big stick that we need to fight, not only for our own rights, and this isn't a completely selfish endeavor based on me.

01:10:44.667 --> 01:10:52.274
I look at my family, I look at my adult children and my grandchildren and I see the fear in their eyes.

01:10:52.274 --> 01:10:54.832
What are we going to do with mom?

01:10:54.832 --> 01:10:57.351
What are we going to do with mom?

01:10:57.351 --> 01:11:01.094
And they're all well they're.

01:11:01.094 --> 01:11:01.454
You know.

01:11:01.454 --> 01:11:02.606
I'm very blessed.

01:11:02.606 --> 01:11:12.832
I have every, I have every privilege, but, my goodness, my children are now going to have to do to me what my mother did, and it's probably going to end up badly.

01:11:12.832 --> 01:11:16.405
And, alana, we need to change this.

01:11:16.405 --> 01:11:18.609
We can't live like this.

01:11:18.609 --> 01:11:19.693
No, we're.

01:11:19.693 --> 01:11:20.154
Also.

01:11:20.895 --> 01:11:36.905
I was at a conference recently and this is a bit of a rabbit hole, but um, at the conference we had a researcher talking about moral injury for um, residential age care providers, staff, and that's something that's not looked at too often.

01:11:36.905 --> 01:11:53.859
Yes, but the very thought, the very action of working in residential age care was having a really detrimental health on the mental health of the staff and they were looking for ways to pick each other up.

01:11:53.859 --> 01:11:57.346
Oh, let's get some fun activities, debriefs and that sort of thing.

01:11:57.346 --> 01:12:11.921
And as, as I was listening, it occurred to me that there is no actual way for someone to go and work in premises that they feel in their guts is morally reprehensible.

01:12:11.921 --> 01:12:20.899
How do you go home feeling good at the end of the day, knowing that you have gone into an institution that really shouldn't exist?

01:12:20.899 --> 01:12:24.371
Now I would say, yes, there is a place.

01:12:25.094 --> 01:12:35.920
Palliative care, absolutely Short-term respite care, certainly in dementia Many of us can get aggressive, dangerous.

01:12:35.920 --> 01:12:39.387
That's a very short-term part of dementia.

01:12:39.387 --> 01:12:42.277
So why are we locked away forever?

01:12:42.277 --> 01:12:49.439
No one ever comes out of a locked ward, but those symptoms can only last roughly six months.

01:12:49.439 --> 01:12:56.594
Organically, the disease will take away your ability to be violent or aggressive or verbally or whatever.

01:12:56.594 --> 01:13:06.609
So that big stick to really just push back on this systemic exclusion of people.

01:13:06.609 --> 01:13:38.015
And I have a bit of a saying that when you turn 65 and you're diagnosed with dementia, in turn you're ostracized, you're dehumanized, then you're institutionalized, you're homogenized and collateralized, and none of those are compatible with human rights under the most fundamental of my understanding, and I don't know, alana, if that even answered your question or if I just answered my own.

01:13:40.229 --> 01:13:47.377
Your question is a much more important one, and it's not even humane.

01:13:47.377 --> 01:13:57.456
I mean, yes, you're absolutely right, none of it's consistent with human rights, but it's also not consistent with the human family.

01:13:57.456 --> 01:13:58.329
It's not consistent with humanity.

01:13:58.329 --> 01:13:59.216
It's not consistent with the way that.

01:13:59.216 --> 01:13:59.962
It's not consistent with humanity.

01:13:59.962 --> 01:14:03.250
It's not consistent with the way that we want to live.

01:14:03.411 --> 01:14:13.386
I think I really want to ask you two things, and they're kind of mixed together, but not really, so take whatever is interesting to you.

01:14:13.386 --> 01:14:46.774
One is if we found a better way, a more desirable, humane, embracing way, loving way, inclusive way to live with older people in our lives and people living with dementia, what would it look like and what would come from it if we had everything that you want us to have and that I share with you deeply wanting us to have?

01:14:46.774 --> 01:15:03.307
What would it look like and I guess I want to sort of include in that question is there a particular element of this or dimension to it around for women, not to say that things.

01:15:03.307 --> 01:15:07.257
I don't want to exclude older men and men who are living with dementia.

01:15:07.257 --> 01:15:20.032
I don't want to say that this isn't something that is affecting everyone, but of course everything has a gendered dimension in our world and I want to hear what you, I'm really interested in what you have to say about that.

01:15:20.091 --> 01:15:29.875
But I also want to know and I don't want to say a perfect world, because I think that that's it's a nice phrase, but but I want to, I want to be a little more.

01:15:29.875 --> 01:15:36.733
I mean, I want to look at a, at a more desirable situation, a more desirable outcome.

01:15:36.733 --> 01:15:39.658
What would it look like and what would that mean for all of us?

01:15:39.658 --> 01:15:54.698
What would it mean for you, what would it mean for our families and our society if we had a different way of approaching old age and dementia and you know they have these expressions living in place, aging in place.

01:15:54.698 --> 01:15:59.885
You know there's all these phrases, but what does it really mean in terms of our quality of life as a human family?

01:15:59.925 --> 01:16:06.507
There's all these phrases, but what does it really mean in terms of our quality of life as a human family?

01:16:06.507 --> 01:16:34.960
Well, I probably come back to that very fundamental disconnect between what we as humans, with our little families, family groups, bigger groups, communities where we look after each other, and back when, for me, when Charles Darwin came with his theory of evolution, where you had to fight or die, you know, and the most best prepared for life is the winner.

01:16:34.960 --> 01:16:44.063
And actually in nature, when you study it, it's the animals and plants that collaborate that do best.

01:16:44.063 --> 01:16:50.729
Human nature isn't to fight and to step on one another.

01:16:50.729 --> 01:16:54.018
It actually isn't, and this has been proven in research hundreds of times.

01:16:54.018 --> 01:17:01.640
Yet we still live in this sort of Darwinianian that, um, the strongest is the most important.

01:17:01.640 --> 01:17:11.699
So we're drifting away in our community structures into believing this, that we are individuals, we're not a group.

01:17:11.845 --> 01:17:33.586
And this push for individuality is actually resulting, in my experience as a granny, in the increase in depression, because our minds are not consistent with our souls, our activities are not consistent with our values, and that, of course, comes through.

01:17:33.586 --> 01:17:36.412
And why can't we find anyone who wants to work in aged care?

01:17:36.412 --> 01:17:40.798
Because it's not consistent with our human values.

01:17:40.798 --> 01:17:47.979
But let's say we lived in a world where it was open to us as a choice.

01:17:47.979 --> 01:18:02.032
I'm not telling anybody how they should be, I'm an advocate for choice and so many families, if they had that choice, would work with the older people.

01:18:02.032 --> 01:18:11.998
Aging would be part of the life course, the circle of life, and I take so much comfort from the indigenous with wisdom.

01:18:11.998 --> 01:18:15.228
And it was particular and forgive my ignorance here.

01:18:15.228 --> 01:18:27.822
It was an Inuit woman speaking somewhere at a conference and she discussed dementia in their spiritual tradition as being part of the circle of life.

01:18:27.822 --> 01:18:50.641
It was natural you know you're a child, you grow, you know you develop and then you sort of almost degenerate back into the wider whole of the universe and again I apologize, that's probably a very rough approximation back into the wider whole of the universe, and again I apologize, that's probably a very rough approximation.

01:18:50.662 --> 01:18:54.225
And I thought how would it feel to be allowed to live with dementia?

01:18:54.225 --> 01:18:59.545
How would it feel if people weren't always trying to control you, to act and stay in their lane?

01:18:59.545 --> 01:19:17.274
What if we had room for me to just live with dementia and die with dementia in my lane, without having to be managed here, there or everywhere, and the freedom that I felt in my heart from just being able to be different.

01:19:17.274 --> 01:19:25.595
Yes, yes, going down and just being allowed to live and die as who I am, without everybody else having to control me.

01:19:25.595 --> 01:19:28.693
Try to keep me engaged.

01:19:28.693 --> 01:19:30.570
Don't have apathy.

01:19:30.570 --> 01:19:33.755
Don't go inside to your peaceful, beautiful place.

01:19:33.755 --> 01:19:41.997
Stay out here and play stupid bingo or whatever foolish thing they'd have.

01:19:41.997 --> 01:19:44.092
You know let's throw a ball around the room.

01:19:44.092 --> 01:19:46.190
You know let's not.

01:19:47.265 --> 01:19:56.333
And imagine if we were in a world where families, as well as being supported to have children, were supported to care for their older people.

01:19:56.333 --> 01:20:10.613
In terms of social security, carers' allowances At the minute, for example, in Australia, carer allowance is very small, it's very modest, but only one person can get it.

01:20:10.613 --> 01:20:18.032
So the expectation is that if I need 24-hour care, one person is paid.

01:20:18.032 --> 01:20:34.788
Not enough to live independently, would have to live with under my roof because it's not enough, and do it all, and the government will then provide four day, four day, four hours a day, five days a week of support for that person.

01:20:34.788 --> 01:20:36.350
That's not.

01:20:36.350 --> 01:20:38.835
That's not doable, it's not sustainable.

01:20:38.835 --> 01:20:43.581
Imagine if we change social security to support carers.

01:20:44.645 --> 01:20:49.841
Imagine if our families were able to see the aging process, the dying process.

01:20:49.841 --> 01:20:56.746
That's natural, it's normal, it's part of being human and it's not for every family, and I'm not saying that it should be.

01:20:56.746 --> 01:21:35.858
But imagine if we had the choice to be able to survive in this world and support our older people to live and die the way they choose, with freedom, without being streamlined into assessment criterias and these levels of care, and you're only allowed this type of wheelchair, not that type of wheelchair, and oh well, you know, if you need more care than four hours a day, you have to be taken into the institution and you know the average lifespan in an institution is surprisingly or unsurprisingly short.

01:21:35.858 --> 01:21:53.368
If we had that freedom just to be old without judgment and just to be allowed to exist and get on with our day that's what I'm asking for is freedom for me, but freedom for my family to choose to participate in my care or to choose not to.

01:21:53.368 --> 01:21:56.632
Both are equally valid.

01:21:56.632 --> 01:22:04.801
But we don't have those choices yet and that to me would make the world families would be families again.

01:22:05.824 --> 01:22:07.131
The guilt and shame.

01:22:07.131 --> 01:22:13.354
And I remember as my young children when their grandma was in residential age care.

01:22:13.354 --> 01:22:23.765
They just could not stomach going there and I inquired why, and I inquired deeply and it was that fundamental.

01:22:23.765 --> 01:22:26.167
This is wrong feeling.

01:22:26.167 --> 01:22:46.140
It was wrong to the pits of their guts, wrong, and we have to sometimes start acknowledging that our humanity may be sometimes more important than vested interests of real estate and industries and things like that.

01:22:48.027 --> 01:22:49.493
And our humanity is at stake.

01:22:49.493 --> 01:22:51.591
It is at stake.

01:22:52.065 --> 01:22:55.569
And we're giving it away, but we can stop it too.

01:22:56.011 --> 01:23:10.827
Yes, yes, well, let me ask you this is there anything that I haven't asked you, that you that you would like to to share, that you'd like to say, or anything that I didn't think I didn't?

01:23:12.768 --> 01:23:14.069
I have no idea.

01:23:21.192 --> 01:23:38.457
Well, you know what, honestly, as I listen to you, I really cannot bear the thought that we wouldn't hear your voice and that we wouldn't hear your insights.

01:23:38.457 --> 01:23:42.119
Teresa and I'm not just being nice, I genuinely mean it.

01:23:42.119 --> 01:23:51.963
As you were talking at the beginning and saying we have no voice and we're not given a place to speak, that really feels unbearable to me, to think.

01:23:51.963 --> 01:24:13.738
Just having heard just this short and precious conversation, it feels really unbearable to me that we wouldn't hear your voice and the voices of so many others, because you have so much to share, so much to understand, so much to help us to understand and to reclaim our own humanity in the process to speak with me and to share with those who will be listening.

01:24:13.738 --> 01:24:30.912
And you give me hope, because knowing that you're speaking in this way and working on this convention, with all the pathos and the understanding you bring to it, that gives me hope.

01:24:30.912 --> 01:24:32.115
So, thank you.

01:24:33.706 --> 01:24:35.672
Ilana, thank you for inviting me.

01:24:35.672 --> 01:24:48.672
It was my pleasure and if I had anything to say to the people listening, it would be fight back, say no, shout, get together.

01:24:48.672 --> 01:24:51.016
Let's find ways to support each other.

01:24:51.016 --> 01:24:57.932
This is not about oh, we don't have a treaty in the United States, we've got a different system in the United States, we've got a different system.

01:24:57.932 --> 01:25:00.011
This is deeper than this.

01:25:00.011 --> 01:25:05.231
This is not about whether a treaty will be applicable or not.

01:25:05.231 --> 01:25:07.390
We can fix that.

01:25:07.390 --> 01:25:11.351
We just need to change hearts and minds that we're not irrelevant.

01:25:11.351 --> 01:25:12.510
Let's fight back.

01:25:12.510 --> 01:25:14.631
Let's fight hard and noisy.

01:25:15.212 --> 01:25:15.393
No.

01:25:15.393 --> 01:25:18.372
I'm with you, I'm completely with you.

01:25:18.372 --> 01:25:37.668
I'm ready to sign up and I'm in Canada, but I think if we could just all of us converge at the United Nations and in every community with our wonderful people like you, who can bring us back home to our deepest selves, wouldn't that be amazing?

01:25:37.668 --> 01:25:39.795
Thank you Teresa, thank you Alana.