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. 

At InCharge, our mission is about working with people to discern the personal and collective elements that are going to make self direction a lasting experience.

Our work this year has largely been with people who require the assistance of others, mostly family, to be directing their supports. We were thrilled to have raised funds which have allowed us to develop a terrific team and undertake our first Ally Project. We have continued to strengthen our partnership with Supported Living Network and its members, as well meeting and working with families in a number of other forums.

In this last piece for 2013 I would like to reflect on the key issues of significance emerging from our work and what we find has been of assistance to people on the path of self-direction.

People’s great ideas require noticing and safeguarding for innovation to be replicated

Often people have no shortage of fabulous ideas and the energy and tenacity to try, fail and try again. They have found a freedom, a satisfaction in directing their supports and funding. They are finding a release and the ability to work on things they have been thinking about for some time but haven’t had the opportunity to do because of the traditional disability service system.

We have found that there is great deal of worth in helping people reflect on their successes and the enormous achievements they are making.

In reflecting with people, we can also be of practical use through recording systems or ways of doing things that are working for them. Through this we find people more easily notice things that they can replicate and discard things that aren’t working. For example, many people are developing very interesting ways of recruiting paid supporters. Simply listening and recording what people have done and offering perspective (eg “It sounds like you have most success using a local networking approach to recruiting.” “That’s right, I do!”) is extremely helpful.

Validating people’s efforts, simply put, helps people to keep going.

It is also vital that people connect with each other and investing in peer-support is a crucial piece of the puzzle.

While many people have great ideas this sometimes masks that they may be experiencing challenges. They look super confident and super productive to the outside world. Of course people are productive. But every person is still on their own path with its challenges and its ups and downs.

With families who are doing a lot of the imagining and thinking with their family member, they can still be blocked by the same things that block society in general; for example, low expectations, not having a sense of what is possible beyond current experience, having past negative experiences that make us risk averse, and trying to work things so that we can get on with our own lives. This means that we too might only be making choices within the perspective or experience we know.

‘Choice’ is a word so bandied about. We have found it very helpful to find ways of working with people that develop trust. When trust is present, it is possible to ask questions and have conversations in which people can start to see choices that they didn’t think were once possible. People must be exposed and experience other peer leaders who are doing things they might not have imagined possible.

Where once services did all (or nothing)

We’ve been very used to a system in which professionals and service providers have been invested as the ‘solution-makers’. This model has rendered invisible the social innovation capacity of people with disability to develop their own solutions as it generates a ‘solution-receiver’ role which is largely passive. The search for solutions outside oneself means that services end up (both if you can get a service and also if you can’t get a service) playing a big role in people’s lives.

I invite you to think for a moment about how you become known to others. How do you form relationships? We meet people throughout our life as we venture forth. School, work, university, travel, leisure, community involvement, political and religious interests. Whatever. Think of all the places and ways we meet people. Some who stick; moving from acquaintance to friend, some becoming a best friend, a girlfriend or boyfriend, perhaps a partner.

Imagine them like circles around you[1]. Those closest to you in an inner circle. Those who are more like colleagues and acquaintances in a more distant circle. The services you connect with on the outer circle. These web of relationships provide us with strength, identity, improved mental health, fun, belonging, assistance and all those other thoroughly researched and documented things we know relationships provide.

The life experiences of many people with disability and their families can be quite different.  People may be more visible in our communities that at any other time in our history, but too few remain truly known. Isolation is still a common experience. There are many possible reasons for this. But what it results in is often a more fragile or smaller web of relationships.

As you become isolated you may rely on ‘the system’ more. That same system that is invested with ‘having all the answers’. Additionally it is a highly changeable system where people come and go from their jobs, where Departments re-shuffle, where funding and eligibility for programs waxes and wanes. Where the quality of what you get depends highly upon the values, skills and experience of the person at the other end of the line (regardless of how much training they receive).

So now we have an image of quite fragile networks and friendships around people, and a service layer that is also compromised (but heavily invested in).

Building supportive relationships is crucial for sustainability of self-directed supports

In NSW the ability to ‘self manage’ funding in certain program areas has, for some time now, offered people something incredibly important. The opportunity to describe goals and needs in your own terms, define the solutions to meet these and to direct the use of resources to achieve them.

This is a hugely innovative force. People’s ideas and solutions have leapt forth. People’s capacity to create, sublime.

Service providers supporting people to self-manage are now ‘stepping back’.

So what happens when we are choosing this path but still in a context of fragile, emergent or perhaps even very few relationships?

This is a big question for the sustainability of a self-directed experience. All that energy, creativity, drive, innovation and liberation needs to be sustained.

The ups and downs in all of our lives are sustained through relationship. All of us need others who hold our life vision and support us achieve it into the longer term.  This is a key aspect we would use to describe friendship, and certainly partnership/marriage, I am sure.

Heart and head learning

We are finding that people are benefiting from input, not just with the technical aspects of self-management but also with the stuff of building relationships for a long lasting and ultimately liberating experience that self-direction is aimed to be.  This is both the case for developing robust informal supports as well as paid supports.

Once you have recruited support workers, for example, how to do you engage them in your vision, support them and develop depth in them so that it is a relationship that bears fruit?

Informal relationships can’t be built overnight.  And we can’t just assume that ‘community’ is now going to take up the space where services have been. The historical experience of segregation and congregation has meant that our communities are largely unused to, and inexperienced in, including and involving people. Yep, there are many people who are just plain a^&holes. But there are also those who are interested when approached but extremely tentative. They don’t know what to do.  But they might do something if given some assistance.

So there is also a genuine role here for some bridge-building assistance. We find it takes understanding the needs and desires of both parties to achieve a well-supported inclusive community experience.

Key steps have emerged through our work. Building a strong foundation entails clarity of vision by and with the person with disability. It also entails discerning the ideal roles parents and engaged siblings in the support system (and so gaining clarity on what other roles would be of assistance if we don’t want to do them), achieving balance across a range of relationships and building mutuality and reciprocity.

When we talk about stepping out, asking, inviting and connecting, this can be emotionally tricky work. Our fears are present. We might have attended many seminars and intellectually know what the pieces of the relationship-puzzle are, but actually taking that step is a totally different matter.

We have found a couple of things helpful here. Firstly our work has focussed on action-learning from the heart and the gut, and not only the technical skills needed for self-direction. These are adaptive learning skills.

Secondly assisting people to imagine and develop  ‘community engagement’ style roles. These are roles assisting people establish greater links into their community, and build and strengthen relationships with people beyond family. We know the NSW has funded the Ability Links roles in the Hunter as part of the National Disability Insurance Scheme launch. It has said that it will roll out these positions across the state by July 1 2014. The success of roles like these depends upon a lot of factors. We are interested in supporting grass-roots community engagement initiatives with roles developed and governed by people themselves as much as possible. Our work with Supported Living Network shows that the work of community engagement can be highly nuanced and sometimes needs micro-community level work to even establish one successful role in community for a person with disability. This work simply cannot be done without knowing people well and with large case-loads.

So we are developing ways for more people to benefit from independent, grassroots community engagement roles in 2014.

One of the goals of InCharge is to grow what I have called an ‘independent ally role’.

We often hear the word ‘ally’ when talking about nations but I’m more interested in its everyday feeling or use.  An Ally is a person who stands with us, who is beside us during a big task or effort.

The need for this role has been brewing in me for many years through my family experience and through observing those individuals and families ‘doing it themselves’ as they self-direct their services and those doing it in conjunction with small, helpful, user-governed organisations and partnerships. I have seen how many people are carrying out wonderful visions for their lives but how difficult this is to sustain over time. In my work in services I have experienced how difficult it is to really drill down on the things that matter to get sustained results – things that matter like friendships, genuine community inclusion, work and moving into a home of your own.

I’ve been engaged for some-time in an ally role as part of a wonderful partnership with Supported Living Network. I spoke about this role and why it works at a recent event about the National Disability Insurance Scheme.

Check out some other fine examples in Australia and internationally.

HomesWest in Brisbane.

Belonging Matters in Victoria.

Deohaeko Support Network in Ontario.

The Circles Initiative in South Australia.

It’s a role that allows people to get on with the job of living their lives, imagining possibilities for themselves, setting directions and vision, but it is also one that can take on a lot of the ‘doing work’ that this entails. It’s perhaps the difference between being both the race car driver and the pit stop team. Many people appear to be both. An Ally can be a key player in a pit-stop team. They might even build a team.

The role takes up the gaps with imagining, thinking and doing which people with disability and their families naturally experience. And they experience it for no other reason than life can be crazy-busy, or because sometimes you simply have to focus on other people or things.

It is also an independent role, by which I mean that it is not owned by government or a non-government service provider, but is completely accountable to people themselves.

At InCharge our goal is to expand this role and make it possible for more people to find and develop their own Ally.

We’ll be showing how this role works in action. Start by checking-out our Ally Project.

Tell us what you think of this idea.