Photo of Laurel Lambert

Guest blog by Laurel Lambert

Laurel’s daughter, Peta, and her friend Natalie, recently purchased a unit with the help of a mortgage. They also live in the Hunter, NSW, and have been through the NDIS. She says that one of the biggest factors in making change is having an ambition that is worth the effort and that you know, deep down inside yourself, will help you to be in a good place.

Want to hear more from Laurel about preparing for change? Click here and join us for our next webinar on 20th April!

We are here, at the pointy end of social reform. For those Australian citizens who live with disability, the National Disability Insurance Scheme promises greater possibilities through improved choice and control over one’s own life. Those among us who live with disability or love someone with a disability, welcome this change.

At the same time as welcoming such a reform, there are many among us who also ponder the question about what this may mean personally, how might it look, how might it feel. Some of us see it as a trigger to wonder what it would be like to live another way? The potential stirs feelings within us like hope, anticipation, uncertainty and anxieties about future risks.

Should I, shouldn’t I, will I, won’t I, I can, I can’t.

Such emotions are completely understandable when faced with such predicaments because for a long time, people with disability have been cocooned in services that have been prescribed by others. Choice has been limited to a pre-determined menu of activities. Such circumstances inhibit the ability to think beyond one’s daily parameters.

Being leaders in our own lives

Now, the ‘big ask’ that stands before us today is throwing up major challenges. This can be due to our lack of exposure to the notion that we alone are now responsible to shape our own destiny.

While ever we are alive, change will be an inevitable and many of us will be sorely in need of some solid leadership. Not the type of leadership that permits us to follow but the type that allows us to lead.

In a time of uncertainty, we often look outside to others for the answers. But in my own experience and in my work with other families in my community, I see that we actually have what is needed to make the most out of change.

Deep understanding

To take a step into change like this (what might it be like to live another way?), transformational leadership is needed. Such leadership can only be born out of a deep understanding of the individual, for this is the instrument through which one can motivate the person to desire change.

It is crucial that any aspiration must be formed out of the person’s own genuine insight and knowledge that there is a place where they truly wish to be.  Having something to hold on to, to aspire to, is a great driver through uncertain times.

For my daughter, and her good friend, having their own home, and more than this, owning their own home, was the light that helped us move through all the uncertainty of change.

Allowing free exploration of ideas

Secondly, it seems perhaps obvious to say, but we had to match this intimacy and knowing of the person with a creative, optimistic and welcoming environment in order to achieve this outcome.

Igniting enthusiasm, selling the benefits and painting a picture of future accomplishments, I found invited participation and developed a unified theme. Creating these shared values also fosters an attitude of continual growth and mutual respect.

We are also in a very good place to bring forward the other skills needed to bring about such desires and ambitions.

Authenticity

Firstly, the ability to know the kinds of communication styles that are going to work best for the person developing their vision. Without this a clear and honest outcome will not be achieved. Secondly, working in a framework of humility and authenticity, never forgetting that the ‘leader’ works to stimulate the environment, not create the thought.

Flexibility

What I also learnt to see is that some processes capture the imagination and energy of the person, and others do not.  What we do need to learn is that it’s OK to eliminate a pathway and try again if necessary. Perhaps a different technique may invite better outcomes. Reinforce our optimism that all is not lost, we are all still on our ‘L’ plates.

Letting go

Lastly, a key trait of the ‘leader/facilitator’ is to know when to surrender the leadership and power to the person so that intellectual stimulation, individual consideration and eventual personal motivation to change the status quo can occur.

Yes, we might feel rightly worried and uncertain at the prospect of change. But we also possess the foundations, when directed clearly, that can so genuinely assist another to take control. It is these foundations we can refine and develop in order to produce the guiding light through change.

Let people own their world, be the architects of their life, let them work to change it and so become that person they wish to be. In the end, their life truly belongs to them alone.

Want to hear more from Laurel about preparing for change? Click here and join us for our next webinar!

More about Laurel:

Laurel Lambert is a parent, a guardian for several others & a representative for several more women living with the NDIS. For many years, she has advocated for people to live inclusive lives. Laurel has worked in the voluntary & paid sectors of the disability industry for over 40 years. Currently, she is the Chairperson of a carer group whose mission is to build good lives for their family member with disability.

L-R Libby’s husband, Libby and Matthew

I find myself often being asked by parents and those who work in the disability sector about being a ‘sibling’. Have there been difficulties growing up? How do I get my kids involved? I don’t want my other kids to be involved because they have their own lives. What strategies can I use in my work to help parents think about their other kids? How do I even get to talk to siblings as we are always talking to parents?

Here are some of my thoughts about the whole area.

Some themes

Brothers and sisters are likely to have the longest relationship with a person with disability. Usually continuing after parents have died, they can last for 70 years or more.

I have run workshops and also observe the roles of siblings in many of the families I work with.

I’ve heard some interesting comments made and stories shared. All with some common themes it seems:

1. A desire by brothers and sisters to be involved but feeling ill-prepared and uncertain about this
2. Families are so crucial to our well-being but they are a mish-mash of power dynamics
3. All sibling relationships are ambiguous. Basically you love and hate your family at the same time but, strangely, this does not diminish love.
4. There exists a deep emotional paradox with many parents. They both want their other children to be there in the future but they also want them to lead their own lives. Even when unspoken, it remains an energy in families and is often hard to talk about
5. Many siblings appear to watching, thinking and planning in their own heads, regardless of whether it gets talked about. They sometimes have very complex and finely tuned plans worked out about where they will live, what will happen for their sibling etc.

The Orders of Love

The Orders of Love is a theory by a guy called Bert Hellinger (Get you Google fingers going) that I have found very helpful in thinking through some of these dynamics.

There is a natural order to a family that is unchangeable (even through events like divorce or death). Parents are first in line. Then there is the first born sibling, the second born and so on. Imagine it like a line of paper cut-out-dolls.

Image of paper cut-out people

When siblings marry or have a long term partner, they then create their own family, their own ‘paper-cut-out’. Their primary relationship moves to their partner and then often their own children.

However, I think a social dynamic impacts many families in which there is a child with disability that can disrupt this. This dynamic is best represented by those relationship circles that Judith Snow so beautifully captured many years ago. Below is a (sort of and generalised) depiction of the layers of relationship most of us have in our lives.

Circles of relationship

But what is a common relationship experience for many people with disability?

This can often contrast hugely to other brothers and sisters whose lives and relationships expand as they grow up and they develop their own intimacy circle separate from their parents. This is actually the typical experience.

So one of the keys to strong siblings relationships is that each sibling gets to have their own wonderful web of relationship circles that are their very own. There isn’t pressure or a feeling that siblings have to become the primary relationship for the person after the parent and as they get older. Imagine those paper dolls look like this – where each person in the family gets their own life. You can see that people aren’t then dependent upon each other for relationship, but rather get to contribute to each other.

Three different circles of relationships

This implies a responsibility by all involved in the life of a person with disability to be working towards building a rich life with lots of different layers of relationships. A life like this mirrors what happens for people without disability.

Other things that are important to consider

Providing siblings with the opportunity to develop understanding of ‘the system’.

Remember, parents have gathered this information over the lifetime of their child (even if they think the system is unsupportive) but it is actually something that needs to be learned especially foundational information like

1. positive stories of inclusion
2. learning what valued roles are and developing a vision for their sibling
3. developing their own vision and having a chance to dream for themselves
4. talking about and mapping our family relationships

A sibling cannot be a parent!

Be wary about looking to ask for involvement based on a parental role. Even when a parent dies, the sibling relationship will stay that way. This doesn’t mean that brothers and sisters won’t play a key advocacy or safeguarding role in the future. But it is healthiest if it comes from their sibling relationship.
It might not get talked about, but caring siblings will be thinking about these things regardless.

Brooching these topics can take us to very raw, very vulnerable places. But it can be crucial for everyone’s peace of mind into the future.

A lit match ignites a row of other matches

This is a follow-up piece to my blog titled Shadowlands: Institutions Big and Small and is a re-print of a newsletter article I wrote for Community Resource Unit. Great newsletter – grab a copy here.

Institutions come in all sizes, but they all begin with separation. Such separation shapes the identity of the people who live in them – not just how they are seen by others but also how they see themselves and their place in the world. My brother Matthew grew up in institutions. Living away from us firstly in a hostel and then in a number of group homes. That was a long time ago and much has changed since then. We have come a long way down a path that has helped us to create a real place of belonging for Matthew – in his own home and a community of his choosing. In this article I am exploring what it took from within us, for this change to occur. It started with a ‘leap of faith’.

I had an insightful experience recently around leaps. I needed to make a decision around something that felt emotionally hard and I was encouraged to try something different to my usual ‘think it out’ approach. Somebody close to me suggested I try a process to gain a different perspective to get me out of my head. This person has much experience helping others who have the same affliction.

The process was to externalise the decision, to help me move from my head to using my body and objects. I was asked to choose objects to represent the decisions or the problems as I saw them and then I had to place them wherever they made sense to me. Very interestingly, the decision I perceived most difficult was the one I placed closest to me. The person invited me to take a step into that place in order to feel what it was like to be there. I had perceived this step as an enormous leap, too hard to take safely really, but there it was, in front of me, only a footstep away.

I was then told to literally step in to this new space and yet I hesitated… a lot. I saw it right there in front of me. Strangely it was very scary to take the step but once I did, I knew as soon as I was there that it was the pathway I wanted. When I was ready this unfathomable leap became just a step.

What I think happened was that I stepped out of my thoughts and their supposed logic and into my gut and heart space. I felt the change I needed to make and this made all the difference. When I felt it, I couldn’t talk it away – there was no going back. All the difficulties still seemed to be there, in the path of this decision, but my perspective on them changed. They began to feel less like difficulties and more just things that may (or may not) happen and just a natural part of the process.

Building the stack

This was what it was like for my family in the build up to when we helped Matthew move into his own home. Some of my earliest memories from this time involved a lot of communication within my family about what was wrong with Matthew’s life. A lot of complaining, if you like. But we did it with each other as we shared the inkling that surely life has got to be better than this. During this time we were building our understanding of what it was we were not happy with. This was in the days before self-direction or personalised support and notions like ‘consumer governed’ or ‘family governed’ had not yet crossed our paths.

I also remember being present with other families at conferences and education forums as we grappled with the question of ‘what could be’. The conversations started with all the things that are wrong and moved over time to better ways of doing things to not only replace them, but to make them obsolete. Piece by piece we were building a vision of a better way.

For my family the vision we were building included Matthew having his own home and a crucial element of this was wanting Matthew to not have to face strangers any more. The pain of dropping him off at the group home to a stranger who didn’t know him or how to communicate with him or even take care of him was excruciating. The heart ache of that was too much. Imagining him at one moment being understood, nestled and loved, and the next moment being completely on his own amongst others, fending for himself, was awful.

Inside us at that stage were murmurings that things weren’t right, but we needed an external trigger that helped us see the possibilities. All we needed was a spark to ignite us and turn these imaginings into possibilities. We needed to be exposed to the possibility that somebody with a severe intellectual disability and autism who doesn’t speak could have their own home and that other people without disabilities would want to live with this person.

What happens for so many people and families is that they live in systems where others are traditionally given the role of problem-solver. This encourages families to dwell in problems and as they are encouraged to give over their power to others in the belief that those others are the ones who will create the solutions. It can also encourage them to dwell in waiting – waiting for the funding package, waiting for the next service. When people are waiting they are largely passive. It is the path of victimhood. We found this to be a bitter, soulless place to be.

Spark

When something else comes in there – I see it as ‘possibility’ – then there is the spark that can lead to a shift. I define possibility as something I have not yet imagined for myself and this is always most powerfully communicated through a peer – that is, seeing that it is possible for someone like me. ‘Possibility’ was the kind of external trigger we needed and once we had that our imaginations ran wild. We dared to imagine him being involved in his community because we saw that others were doing it. We dared to imagine him living with someone who didn’t have a disability because others had shown us it was possible.

‘Possibility’ has got little to do with centres or service providers or case managers or assessments. Ironically, ‘possibility’ dwells in ordinary things that make life great for all of us and makes us want to get up in the morning. These things are the possibilities for all people, even people who most challenge us.

Ignition

Once we were ignited by possibility, we needed to take ownership of that possibility; see it as not just an idea somebody else had made happen for themselves, but something that could fully take its own shape in Matthew’s life. We were the ones who needed to make this change. It was not the responsibility of anyone else – government, service providers, case-managers, Local Area Co-ordinators etc.

That is not to downplay the importance of collaborating with others. We had many genuine and valuable allies that helped us make our vision for Matthew possible. In fact having professionals on board helped us facilitate new breakthroughs. They were most useful when they were true allies. Allies because they had taken ownership of the part they could play in change. Their work was genuinely transformational and that’s what made them good.

I also remember inviting our long term family friend, Jane, to help us. She became Matthew’s first circle member when we all began talking together. I remember my mother’s tenacity and strength.

Fanning the fire

Once people are ignited then a fire is built. That’s when we see this idea of a fire burning in people’s lives so this is then about creating and tending to what you imagine. Moving from possibility to imagination to then creating that thing that you want. These are really the conditions for personal autonomy, for being in charge.

I remember when we had been overcome with the possibility of Matthew moving into his own home. I would wander the suburb where we imagined his home would be (a suburb close to my university where many of my friends and other young people lived). I would stand in front of lovely homes (not grand homes ) that I thought he would like to live in and picture him there.

It is important to continue to add fuel to your own fire by keeping in touch with peers and possibilities. The point is not to light the fire once, but to keep it burning and the more people attend to a fire the longer it is going to burn. We are thinking about this idea of sustainability, of keeping something going, of keeping something alive. For this you must do another potentially challenging thing. You must be with others, especially those that can lovingly challenge you, and you must nurture those relationships. If you do this work on your own you will have a harder job keeping that fire burning.

I know that Matthew’s life, with supportive networks (both paid and unpaid) around him, is something that helps other brothers and sisters to get involved and plan for the future. To feel more able to think about developing, building and sustaining these supports after their parents have died. If there aren’t these networks and all you can see is you, it starts to feel again like an enormous thing you will have some-day to ‘take on’ – but this is for another article!

Conclusion

The lessons I have shared from our experiences with Matthew are relevant both on a personal level but also one much broader. The process I have outlined above is relevant to people looking to create change in systems as well as in the lives of individuals with disability.

The families of today are taking these leaps and being ignited by the ‘possibilities’ shown by other families. They are grabbing the possibilities – stepping in to them, feeding them and making them their own. They are building networks to fan the fire.

My hope for the future is that we can assist each other, from the space of radical change, to grow new organisations, projects and enterprises. Working with people as they do this work for themselves, so that when they take this leap, it might not feel like a jump into the abyss.

This piece of writing came to life in conversation with my friend and mentor, Pam Morris, and a social enterprise mentor, Tracey Allen. Pam’s son moved out of Peat Island institution in NSW. She was the only parent who supported its closure at the time. It didn’t close but her son moved. 

Connection with others is part of why we’re here. To love, to be loved in return and to belong.

But the risk here is heartbreak, let-down and rejection.  So strong, caring relationships and belonging keep people safe but they are also a key experience of vulnerability. Many people decide that this is too big a risk to take on behalf of themselves or their family member. How might we find a way forward here?

In my experiences around my brother and with other families and individuals in building relationships within community, I find a common struggle. It is not with the intellectual understanding as to why relationships are important. It is with emotional step to start, to try, to reach out to others, to ask.

So I’m going to talk about the things that get in the way that I think are within us. It is comfortable to think that devaluation is something that the ‘system’ and others create. It means that others are the ones that need to change.

In recent years a personal shift I have taken is to value and focus on my inner self more. If something out there needs to change, what am I doing in myself about it? In my 20s I thought this was a luxurious navel gazing experience for middle class wankers. The world was going to buggery and there simply wasn’t time for this. Action was what was needed. Now I see that, whatever our position – whether we are thinking about ourselves and our own relationships, or whether we are thinking on behalf of another – we can all reflect on our place and our power in our own or another’s life.

What are safeguards?

We might typically think of them as measures which offer protection against vulnerability arising from devaluation.

A small example: several years ago in checking Matthew’s budget book we discovered a discrepancy between the amount Matthew withdrew at the bank and the amount that would be entered into his ledger. For example, his bank statement would say he took out $160. His ledger would note $120. Small amounts – usually 20, 30 dollars would be missing. And always the same signature of the staff member when this happened. Theft by a known and trusted person in Matthew’s team.

We realised we had little knowledge of Math’s weekly monetary matters. The safeguard we created was that from now on a family member would check Math’s budget each week, create a new budget, write it in his ledger and draw up the withdrawal slip with the amount on it. We’ve never had a problem since. But have we had other potentially negative impacts?

Wounding experiences

This leads into thinking about wounding experiences. Matthew has faced many wounding experiences from people whom he and we trusted, or that the service system supported and trusted. Some of them are still too painful to mention. What happens when trust is broken? What happens when you feel people have let you down? Matthew’s disability is such that he just does not comprehend these experiences intellectually and this makes it all the more painful because his experience is being in close relationship with someone one day and then never seeing them again. He can’t speak so how does his voice get articulated in these experiences? Often it simply doesn’t.

The question I have been asking recently (and no clear answers yet): as a family governed system of support, have we created safeguards from these experiences that come from a wounded place, a place that often finds it hard to trust, a place where we are trying to make up for all that lost time when Math was away from us, a place of feeling let down and hurt by others?

If this is the case, and in a ‘representative system’ (that is where family and others largely represent Matthew’s interests), are we inadvertently adding to vulnerability when we take action from these places? It is only human to find it hard to bounce back from the breaking of trust, from experiences of rejection: to move on and treat the next experience as totally new, without the ‘baggage’ of the past. No-one can be blamed or judgement made about any of these very human reactions and experiences. But in a representative system, because you are acting on another’s behalf, it is always healthy to ask questions and to reflect. A case in point with the example that I have used above. With only family now with authority around Math’s weekly finances, what impact dos this have for others in his system? I have found that we have locked ourselves into a solution that doesn’t give us much freedom. Who do we ask if family members don’t want this role anymore or want to go away or are somehow unavailable. Do we trust anyone else?

My hypothesis

I still firmly believe that relationships, connection to others and inclusion are the strongest safeguards against wounding and devaluation. What ultimately keeps people safe is other people and there are lots of powerful and life-giving examples of this in Matthew’s life. For starters the difference in his life since he came back to us and reclaimed his place in our family. Connection is why we’re here. I believe it is part of our human identity – to love, to be loved in return, to belong. Our identities are relational. I am me because of my relationships to others.

So here we have the block – believing in the power of relationships but having experienced multiple wounds from relationships.

Fully embracing vulnerability

The bind is that relationships, inclusion, belonging keep us safe, but they are also a key experience of vulnerability. In order for connection to happen we have to allow ourselves to be vulnerable.

What if we tried to see vulnerability a bit differently; as a human experience?

I would encourage you to take a look at the work of Brene Brown.

Listening to her research into these areas of connection, vulnerability, shame and authenticity changed my whole perspective and was catalyst to me delving into these questions. Check out the fantastic presentation she did for TED Talks a couple years ago.

The risks when we reach out are being misunderstood, being rejected, feeling out of control, feeling exposed, fearing being seen as needy, all our crappy characteristics will become known and then we we’ll be left, being in a place where there are no guarantees …… this list goes on.

As a family member, I think we often take on these fears on behalf of our person with disability. They have faced so many wounding experiences already that we don’t want them to have to face anymore if we can help it. Actually we become afraid to take a risk on another’s behalf.  All the previous wounding experiences pile up and this history makes it hard to take any more risks. Do we then become part of the wounding structures ourselves because we can’t bring ourselves to do this, because we perceive too much risk in reaching out? Because this kind of vulnerability is also the birthplace of joy, creativity, love and tenderness.

Brown’s research reveals consistently that the one thing that keeps us out of connection with others is fear of not being worthy of it. People who felt they were worthy, fully embraced vulnerability. To them it wasn’t pretty but it was necessary. If I haven’t tempted you to her website, I hope I have now!

This then got me thinking about shame. Do we carry shame about ourselves or shame on another’s behalf? Do we believe that we or the people we represent, are imperfect but worthy of love and belonging? If we don’t believe that people can connect to others in their vulnerable and imperfect state, or that there are some people worthier of love and belonging than others, then we won’t be able to take the steps of reaching out to others, of developing relationships beyond those paid to be there.

Brown’s research over many years has revealed that the only difference between people who have a strong sense of belonging and worthiness and people who wonder if they are good enough is that they believe they are worthy of love and belonging.

We need the courage to be imperfect, compassion to be kind to ourselves and celebrate who we are.