CRUcial Times Issue 29 - Feature Article 1

Not Waiting: Creating

Margaret Rodgers has a long involvement in the lives of people with disabilities and their families. In this article Margaret draws on her current work with Mamre Association’s ‘Building Informal Networks’ project. The project emerged in response to separate requests for assistance from five men and their families. These young men wanted to get on with their lives; move out of home, and make friends. Mamre is committed to working slowly and individually to explore the possibilities..

In his book, ‘A Bunch of Poesy’, the Cartoonist, Michael Leunig has a cartoon entitled ‘How to get there’. The directions for ‘getting there’ are as follows:

Go to the end of the path until you get to the gate
Go through the gate and head straight out
towards the horizon
Keep going towards the horizon
Sit down and have a rest every now and again
But keep on going. Just keep on with it.
Keep on going as far as you can.
That’s how you get there.

My work to build informal networks for five young men from the Mamre community in Brisbane emerged from their desire and the wishes of their families, that they be connected with other people. They wanted the opportunity to have friends, close relationships and to get on with life. These are hardly outrageous hopes and yet are often out of the reach of people with disability. Most people would agree that having strong, supportive networks around people can be a great starting point for other things to happen, but many people are left wondering how that can be done.

I think, that in our efforts to assist people with disabilities that we care about, a Leunig style framework like the one above is much more helpful than pretending there are Ten Easy Steps or that there is a recipe somewhere.

In fact, embracing this quest means letting go of certainty and straightforward answers and muddling along until you find the right answer for that person, at that time. Using Leunig’s directions on how to get there, I want to share with you some of what I have learnt.

Go to the end of the path until you get to the gate.
The important word is ‘go’: start now; do not wait; it is never too early and it is never too late to begin dreaming and scheming with this person about how they can live their own life or perhaps a fuller life. If you have been waiting then work out what you have been waiting for.

Many people wait for funding. Paid support will continue to be an important component of life for many people, but funding will never buy friendship, belonging, intimacy or commitment. These are things that money can not buy which means they can be worked on at any time. It is always an interesting exercise to do a stock take on the resources you already have, both paid and unpaid, and to think about how they might be rearranged.

The gate is a good place to stop for a moment. If this is your job and you do not even know the person or if this is a relative and their life is so tied up with yours that it is difficult to know where you stop and they start, then do not go through the gate. Wait at the gate until you are confident you can truly appreciate and represent the fullness of the person and the gifts they have to offer, and believe that they have a unique life of their own to live. You have to believe they are entitled to live their own life and not simply fit in to the lives of others. If you cannot do that; retrace your steps and find someone who can, or wait at the gate until the right person comes along.

Go through the gate and head straight out towards the horizon.
Once you've gone through the gate and made the commitment to the person, another important task in figuring out ‘how to get there’, is to spend some time working out where 'there' is or could be. This may involve the finely tuned skill of listening to a number of voices at once without forgetting what you also know to be true. Listen carefully because some voices are practiced, articulate and seductively logical. Others are hesitant, afraid, unclear and can initially seem unreasonable. It is not a simple or quick process to find a balance between a person making their own decisions and choices, and the vulnerability that comes with disability. When you have heard what people want, it is good to be able to talk about it clearly because it may be your job to ask other people to help make it happen.

Find out who enjoys this person: ask about the people who love them, believe in them and see the best in them. This is not about finding people to fix the person; it is not about gathering people to be clever about another person’s life. They are not unpaid workers in the disability field. It is about inviting them to share a part of life’s journey with the person and being open to having the person share their life journey with them.

Ordinary people are interested and are sometimes just waiting to be asked. Ordinary people have a lot of information about ordinary life and relationships. There are people who know about budgeting and bank accounts and how clean a teenager’s flat is likely to be. They have a good sense of what is not really important and what is downright unfair.

Find a way to give these interested people the information they need about what is happening and what the person needs and an invitation to be involved. There are lots of ways that others have found to do this, but you will need to work out what will be best for the person you are supporting and their family. In some situations, having people work together as a group is very helpful, but this does not work for everyone.

Keep going towards the horizon
You can learn from others and listen to what they have tried. There is much literature on helpful approaches, such as person centered planning and circles of friends, but eventually you have to create and invent and muddle through to find something new and unique to this person. There is no computer program to shortcut this process. This is not a case of someone having the answer and refusing to share it with you. Listening to one more overseas speaker or reading one more book will not take away the need to eventually just start working it out.

Sit down and have a rest every now and again
If you try something and it does not work, have a rest and a think and then try something else. Celebrate what has been achieved. One of the networks that I know keeps notes of their gatherings and progress because they expect things to change for their friend. They think this change might be slow and subtle, and they want to be able to look back and see how far he and they have come.

But keep on going. Just keep on with it.
Build and work and think and plan for the long term. If there is a group, make sure someone has the job of keeping the group working together over time. Get organised. Have guidelines about how you will work together. For some families an important reason for building these networks is to have people who know their son or daughter well, before a crisis occurs or they are too old to keep on doing everything.

Keep on going as far as you can. That’s how you get there.
Keep on going as far as you can and go as deep and as broad as you can. Go into the excitement and fun and the pain and frustration of a real and ordinary life. Just keep on going. If you think you have arrived, well perhaps you need to go back to the gate and wait there for a little while, and my wish for you is that you never get there.

‘A Bunch of Poesy ‘by Michael Leunig
1993 HarperCollins.
Reprinted with kind permission of
HarperCollins Publishers Australia.