When siblings understand the vision for their sibling with disability's life and feel part of it, the future becomes stronger for everyone.
Most conversations about safeguarding the future focus on parents. But brothers and sisters are often quietly carrying the same questions. What will their role be, and will they be ready? And has anyone even thought to ask them?
In this presentation, Libby Ellis – Individualised Living Program Manager at Mable and sister of Matthew, who has a significant disability and lives in his own home in Hobart – offers a perspective on safeguarding the future that is rarely heard: the sibling’s view.
Drawing on 25 years in the disability sector and many conversations with brothers and sisters across the country, Libby explores four things that help make space for siblings:
- pride and inclusion
- understanding that a sibling is not a parent
- building networks of support
- and breaking the silence early.
She also reflects honestly on the gaps in her own family’s planning.
About Libby Ellis
Libby Ellis lives in Hobart and has spent 25 years working for a vivid vision of inclusion for people with disability. She is the sister of Matthew, who has a significant disability – and has walked alongside him from the time he left the family home at nine, through hostels and group homes, to helping him move into his own home in his mid-twenties.
Libby founded the capacity-building organisation InCharge in 2011 and has since held roles at Housing Hub, Summer Foundation and Mable, where she is currently the Individualised Living Program Manager.
Transcript
Please note that the transcript provided may contain occasional errors.
Thank you, Imagine More, for the opportunity of inviting me to speak today. So let’s begin by introducing myself, my brother Matthew and other family who are active in his support system and life at the moment.
So this is Math, and Math wakes up every day like it is the first day. And I think that is an absolute gift. Yeah, I’ve got some more photos and I was a little bit worried as I was putting them together that it was like that friend on social media that you never hear from and then suddenly you get like 55 really specific holiday photos and you’re kind of like, yeah, sort of interesting but, you know, it’d great to hear from you in between the holidays.
But anyway, yesterday there were just… There’s just been such wonderful photos over the last couple of days that I kind of feel okay about that. And Jan did say, you know, we need to know who’s who in the zoo. So this is Math, and my husband Sebastian and myself.
We’re all in our 50s. I like to think our early 50s. Take a look at this photo. So this was at Math’s 50th birthday.
I’ll just take you through the people because they’re really important to this story. In the back, there’s my sister-in-law Tamara. Tamara is from Slovenia and has mum and dad – well, she has family in Slovenia, just her mum now.
Slovenia, having family in other countries is important in thinking about siblings and the future and who we have to think about and care for across our lifetime. So there’s Tamara. There’s my mother, Judith. Judith’s now 82.
There’s me, there’s my husband Seb. And in the front are my two brothers, and my younger brother James and Matthew. And James and Tamara have two kids, Rock and Rhea.
So this is Matthew’s dad, Roland. And dad has on-and-off involvement with Math over a significant period of time. And the last time they saw each other was Christmas last year. And they really, really enjoy seeing each other when they do catch up.
So this is a video from his 50th birthday. And he really, really likes beads. They are a very important tool. So we all made beads as part of his birthday celebration, and he kind of sat and received them, and it was really, really lovely.
So I like to show Math in action a bit. Don’t know if you know this schema – the thinking brain, the feeling brain, the body brain, and Math’s body brain, we’ve learned, was significantly impacted.
And we’ve been doing some interesting work through a “positive behaviours for practitioners” on, kind of, rebuilding his bottom brain and doing a lot of stuff around language, declarative language, co-regulation instead of imperative language, it’s amazing learning. I’m learning the difference between saying, “Get that out of the fridge,” versus, “I wonder what we’ll need for a cup of tea.” This helps people make decisions, better initiate things.
So this is a bit about Math, and as I said, I like to show him in action because often when I tell his story, I found that families particularly think that he must not have a very significant disability. And he does have quite a significant disability.
Okay, so Math currently lives with Aaron and Jen. Unfortunately, I didn’t have a really nice photo of Aaron and Jen, but I was quite pleased I get to show Linda without her sunglasses on. So Aaron and Jen are two really great people who’ve shared Math’s home for a couple of years.
And here they are on a webinar with Linda and Resourcing Inclusive Communities. It was about housemates. And they provide Math with companionship, overnight support, and help to maintain his home and his garden and a bunch of other things because they’re really lovely people. And I call them ‘supportive housemates.’
I think one of the really important things to say about this, which also links back to kind of the significance of Math’s disability, is that, you know, Aaron and Jen are not the first. And Matthew has lived this way with different kinds of housemates for a really long time. I think it might be the mid-1990s when two of my university friends took up this role.
When Matthew first moved out of institutional care, my younger brother and I lived with him. That was a complete disaster. But we didn’t have anybody else, and we were kind of starting to work stuff out.
Once we started sort of getting into the groove, two of my university friends stepped forward. That was the mid 1990s, into this role that we crafted and had called a supportive housemate.
And what was the genesis of this kind of idea for me? And I was recalling yesterday, sort of this idea of osmosis and I remember attending conferences, so you know, if your other kids aren’t here at conferences, great idea to invite them to the next one, because I have clear memories of sitting, watching photos of young people with disabilities who looked much more disabled than Matthew and thinking, I want that life. I want that life for Matthew. So, stories are really the genesis, this was the genesis for me, of a vision, of developing my own vision for Matthew.
And I guess if you’re wondering, if you’re sitting and kind of wondering if anybody would want to live this way with somebody with a significant intellectual disability who doesn’t speak and, you know, Math does stuff that isn’t really pleasant, and he also has, you know, shit happen to him. So I’m really here, I would like you to hear that yes, yes, people can live with somebody with a significant disability, significant intellectual disability, who does really strange stuff sometimes. And Matthew’s story is a testament to that since the mid-1990s.
Is it always easy? Most definitely not. Like, support workers, have we recruited dickheads? Yes, absolutely have recruited some strange people.
One guy, I was remembering yesterday was into dolphin therapy. As soon as he mentioned dolphin therapy, I knew that he was going to be on the way out.
Have we got into real pickles? Yes, we have.
Have we spent significant periods of time without housemates? Yes, we have.
Is it worth it? Yes, it is.
Okay, so with that context about Math, let’s move more into the topic. And actually, probably the first thing to say about moving more into the topic is that I almost didn’t come to the conference. So there was kind of family tension last week on this very issue of succession planning.
And our way of being in this, I guess, goes up and down. Sometimes we make progression. By the end of the week, though, things had turned a corner, quite interestingly.
And then on Saturday, my mother tripped and fell over and couldn’t get up, and I couldn’t get her up. And Judith needed to go to hospital. And she dislocated her shoulder, and she’d bruised and battered her body.
On Sunday, I just was like, I’m just going to ring Jan and tell her I’ve got nothing to say and that I can’t come. Actually, I was kind of going to invent COVID or something. So you know, if we got audited by Marg Ward, Futures Audit Pty Ltd. Yesterday, I was imagining the logo is just Marg with her glasses and with her finger like this.
So if we were to be audited, there’d be gaping holes in this thing called ‘safeguarding the future’ and futures planning. So we’re no exemplar. And I think that’s what probably bothered me. Was like, I don’t know that I can get up and talk about this stuff because we’ve got gaping holes. And the weekend sort of really brought it home.
So we’re not an exemplar, but we are an example. And we’re unfolding and we’re how it is really, I guess. We’re how this is for some… for many people perhaps. And perhaps this is, I’m hoping this might be comforting to some people.
So this is my mother, Judith, with Neville, ex-Premier of New South Wales, Neville Wran. This is Mum taking on Neville Wran. You could swap out Neville Wran for other powerful people over an extended period of time. And I know Judith wouldn’t have been talking inconsequential stuff.
Actually, she probably would have been talking about things that paved the way for individualised funding in New South Wales. Things like those first attendant care packages, individualised funding in post-school options, and even the first sort of individual packages around home.
They were about $50,000, was that right, Linda? Supported Living Fund. Catherine and Linda, yeah.
And this is currently Judith as well, trying to unravel a historical arrangement with the New South Wales Government around Matthew’s house and safeguard it for his future advantage.
So maybe you recognise yourself in this photo. Perhaps you connect to the fierceness, the righteous anger, the deep vulnerability behind this outward expression, the body and heart knowledge of wounding and rejection that your son or daughter might have faced. Or the spectre of the unanswered question, which is, “What will happen when I die?” So if you’re here thinking this is really hard and I don’t have my shit together, I guess I’m here to say yes, yes, it’s really hard.
Uncoupling my brother’s support system and reconfiguring it so it works for my younger brother and I and our families, who have family in Slovenia and a family in Canada who will need to be cared for. This is harder than breaking Math out of an institution. You know, we broke him out with nothing. We had no funding and no house. But I feel like this task is the hardest thing we’re doing and going to be doing.
So I guess on Sunday, those events, Sunday and Monday, I kind of got my shit together and really got me reflecting on the lessons that our story has to offer.
So yeah, these are my reflections, and I guess in this we do need to acknowledge that you don’t get to hear other perspectives, so you don’t get to hear my mother’s perspective. You don’t get to hear my younger brother’s perspective, or our partner’s or those on Math’s Circle. So I guess I’m just letting you know that, you know, I feel like I can stay in my swim lane without diminishing other’s stories.
So there’s dysfunctional sibling relationships, aren’t there? And there are non-functioning… There are non-existent ones, and there are dysfunctional ones, aren’t there?
So yeah, so let’s move a bit further into that swim lane, that sibling swim lane.
So I wanted to share four things that I know help make space for siblings and are part of safeguarding the future. And the first I’ve called Pride and Inclusion.
So firstly, it has been so, so important for me to see Math live his own life, to experience success, failure and milestones. And I’ll share a couple of stories with you.
So when I help Math clean his teeth sometimes… so I’m standing, and I cup his jaw. It’s the worst thing. He absolutely hates it.
But he’s there, and I’m trying to communicate love to him as I’m cleaning teeth, which he hates. But I’m trying to imbue a whole body sense of, ‘Math, I really love you.’ And one day, I was doing this, and he had newly moved into his home.
And he turned away, he turned to the mirror, and he looked at himself in the mirror, and he smiled at himself. He had this huge smile.
And I was like, yeah, Math likes himself. He likes himself exactly as he is. He is proud of himself. He is content with who he is.
The other story I was remembering was being at a music festival and looking across the field, my husband and I looked across the field, and there was Math with this sort of harem, I thought of them, of supporters. And we’d borrowed a caravan so that he could stay at the festival. And I looked across this field, and he was having a great time.
And I was like, yeah, it’s just kind of going on. It’s going on, and I can witness it. And I can appreciate it, and it doesn’t depend on me, but was probably, you know, partly my idea that it should happen, and I saw a sort of a vision and an idea unfold.
Seeing photos of him travelling around Tasmania for his 50th birthday, where he took a hot air balloon, and this took a lot of planning between Julian… ao the two people there, Julian and Savan and myself, but the two of them made it happen on the ground on the day, and it was just so worth all the time that it took to make it happen. And again, sort of wonderful to experience that kind of governance role, that having a vision with others who then help make it happen.
I guess pride and inclusion is also about establishing his contributions in his community, whether it’s been his micro enterprise attempts or his volunteering. So this helps siblings answer some of these questions, which might be playing on their mind. “Can I have my own life? How do I make choices? Will I be the sole source of relationship and activity and security?”
So Math broke free of attending a day program and just being a client of disability services. So taking up roles and being part of something, being visible and contributing things has not only been critical for him, but vital for me.
So if you’re working with families, this is something I’ve tried to do in my working life, is establish the experience of success as early as possible, particularly when families are trying to make a change from the paths. So if you’re wanting to not go down one path or move from one path to the other, sort of experiencing success early is really important if you’re working with families.
So pride generates its own positive energy. You want to help bring about more of that success. You feel it’s doable, it’s not a burden. It’s exciting.
Experience success is its own feedback loop. Yeah, I want to get involved because this is just so cool. And I want to help get more of it for Math. So yeah, these are things that are wins for everybody.
So yeah, my question here is, how can we focus our efforts on assisting disabled individuals with these things that really matter? Who am I in the world? What do I have to offer? And all of the things that come from genuine inclusion.
So this is my second point that I think is very helpful for siblings. A sibling is not a parent. This sounds like a truism, but it took me a long time to learn this. And I’ve got to be honest, almost at the cost of my marriage.
So I’m saying it because I could have benefited from somebody saying it in a room I was in. I wish somebody had said it in a room I was in 20 years ago or so. So I’m not Matthew’s mother. And I can’t be Matthew’s mother even when Judith dies.
A sister or a brother, I can, however, love, support, safeguard, and advocate on behalf of Matthew. Siblings may, we can, be there till the end. We may even be there at the end. This is something I think about, is that I might be with Matthew as he’s dying. Maybe he and I… I’m the last person that he sees, perhaps.
So I sort of learned this, ‘a sibling is not a parent’, after engaging in some therapeutic work called ‘Family or systemic constellation’ by a German psychotherapist called Bert Hellinger. And this method really assists people to uncover hidden dynamics in a system, and a family is a system.
So the goal is to free up blocks through developing awareness of what’s missing of those dynamics and ultimately assist with reconnection and loving relationships between people in that system. So this work is kind of about mapping relationships by, it’s more than this, but I’m explaining it very crudely, it’s sort of mapping relationships by using people and objects.
And I learned there’s a natural order to a family that is unchanging, even through events like divorce or death. So parents are first in line. This is Bert Hellinger’s work. Parents are first in line.
Then there’s the firstborn sibling, the secondborn sibling, and so on. So I kind of started to think of it like a line of paper cut-out dolls. And if we were asked to represent or place our family members according to relationships in our family, our family dynamic, none of us would line our families up like that.
We would have all sorts of different configurations. So I mapped out my configuration, and this is kind of what I realised, you know, what are you doing here, Libby? You know, when siblings marry or they have a long-term partner, they create their own family, their own paper cutout.
So the primary relationship moves to my partner. And for my younger brother, it’s his partner and his children. That’s his primary relationship. So if you can visualise it, here is, so there’s Matthew, here’s Sebastian and I. We’re in a primary relationship. We don’t have children, but we’re a family. And then there’s my younger brother with his partner and his kids.
And then if you think about Judith Snow’s circles, so remember Judith Snow’s circles is like, you know, circle of intimacy, who are the people in my life and my husband’s life. So you can think about if I’m looking over to Matthew, and he doesn’t have those circles of relationship, this goes back to Pride and Inclusion.
You know, we’ve got our own lives, we’ve got our own family. I can’t be Matthew’s parent, but what I want for him is like a richness in his circles of relationships. So he needs to have his own people.
So we all have our own circles. This is the aim. We all have our own circle, and we can all contribute to each other.
So I guess my final point here is really, it’s not going to work to kind of build something that looks like another person stepping into a parent role. Because I can’t be a parent, I’m a sibling, so it’s sort of not going to work anyway.
So this brings me to my next point, which is about the importance of building networks of support. Matthew has had a small group of people who meet regularly to think about his life and help us make good decisions for a very long time. They’ve been different people over time. Sometimes we’ve not done it very well, and we’ve really harmed relationships, but I do know that this has been absolutely essential for a belief in a positive future.
The last thing is sort of breaking the silence, asking and being open. I’ve made it sound nicer learning how stuff happens. So any loving sibling will be thinking about stuff. They’ll be making plans in their heads, whether you’re talking about it in a family or not.
And as you might have heard, some of my thinking was very misguided, putting my own very important relationships at risk. So it would have been better to kind of sort that out earlier in life, be more open.
I thought of a couple more scenarios sort of under this heading. One is this kind of thought, like ‘Libby, you don’t need to be involved. I don’t want to burden you. You go and live your own life.’
And it’s kind of like, well, okay. But like that’s all very well and good. You know, who else is there? If there’s nobody else there, then that kind of sentiment doesn’t hold weight because I’m looking around and there’s, you’re telling me that I can go and live my own life, but maybe there’s nobody else.
And I’ve been working on something, visualising this thing, I’m calling it the “Vanguard versus the Guards Van.” So I’m kind of this idea that you go off and you’d be in the vanguard, the driver’s seat of your own life. So is he doing that?
And then over here is this amazing thing going on with somebody in the vanguard of my brother’s life who’s actually kind of laying out the tracks as they go, because as we’ve heard, doing stuff that’s interesting and innovative sadly is still quite marginal in Australia. So I’m sort of here in the vanguard of my own life, and then there’s a vanguard of somebody who’s building these sleep…, you know, building these train tracks, and I’m like, what are these things? Will I be able to do that?
And then this sort of story that at some point this will end and I’ll have to kind of merge the tracks or come over into the, you know, be in the guard’s van at the back of my brother’s life and sort of scrape to the front to try and learn how to, lot of lay these tracks out.
So this would be much better if kind of here at the beginning, you know, we were sort of thinking and talking about and learning about what are we doing here? What are the train tracks that we’re laying out here? And can I have a say in… Can I get involved in what this looks like from an earlier stage?
So I’d be suggesting it’s kind of not… It feels more burdensome to have a suggestion that there’s a of a wonderful life that I can lead until some point when I’m going to have to kind of come over here and learn about all of this stuff. And maybe I’m 50, maybe I’m 60, you know, and not as energetic as I was in my 20s.
So I thought that the final part of today is to do an invite to you to some personal reflection and make some space for our own personal wisdom in this area. I’m going to ask you a couple of questions. You can just think about those questions. But if you wanted to, I would love you to write down your thoughts as well.
So I’m going to invite you to reflect from the other’s perspective. So if you’re a sibling, imagine yourself as the parent. If you’re a parent, imagine yourself as a brother or sister, as one of your other children.
If you’re neither and you have a professional role, maybe reflect from the perspective of the persona that you have the least interaction with. So if you mainly work with parents, I invite you to reflect from a sibling’s perspective.
So yeah, if you’re a parent, take a sibling’s perspective. What do you want to say as a sibling? What do you think is very important? And if you’re going to write, I really encourage you to sort of think from the eye or write from the eye as if you were that person. I am, I want, I think, I hope.
If you’re a sibling, take the parent’s perspective. What do you think is very important to say? So I might imagine in this exercise, maybe I might imagine my dad this time around. What do I think he would want to say that’s really important to him?
If you do work in this area, what can you do to help interested siblings develop understanding of the essentials? Be able to develop their own vision, understand how things work. How could you get more siblings on your mailing list so we don’t have to hear about stuff through our parents?
I also wanted to say that I suggest that siblings will have a stronger worry the more competent you see your parent or parents are. So this is kind of more burdensome, this thought of seeing an extremely competent parent work and work and work and say things like, you go live your own life, but always wondering, am I going to be able to step to do that? Am I expected to? Will I be able to?
This is more burdensome than being actually invited in, you know, being asked, you know, what are your thoughts, being able to do some things that I have energy for, that I would like to do, that I would like to learn about. That’s not burdensome. That’s preparing the future for myself.
It doesn’t have to be an all or nothing. You know, it was really wonderful. I mean, I’m involved in quite a lot of aspects of Matthew’s life, but it was really wonderful to just be working with Julian and Savan on how Math could go on a hot air balloon for his 50th. Great to be able to do that with his friend and support worker.