Cultural exchange about cultural change

Continuing the In Control International theme of my previous posting, the two-day international meeting covered topics that are relevant across a range of cultures. Amongst other things, the meeting covered:

• cultural change (in terms of service planners, agency staff and the broader community)
• planning and renewal
• safeguards
• the connection between rights and responsibilities in people's lives
• the changing role of service agencies
• the challenges of collaboration.

I can easily imagine that these topics will be of intense interest to people living with disability, families, service agency staff, and government staff. If you would like more information, or want to hear more about any of these topics on this blog, then do get in touch, either via the comments section of this blog or via the email address on our website.


For this post I'm focusing on the first one - culture change. The word 'culture' is used in a number of ways. It can be something you grow in a petri dish especially if you haven't cleaned under the kitchen sink in a while. It can be used to describe ethnicity, for example when you visit a different country or community and encounter people who have a different shared experience to you. Or it can be used to describe the arts, where apparently you are getting culture when you watch ballet.


It can also be used to describe the main features of people's attitudes and behaviours in an organisation or system. This version of 'culture' covers the shared ideas about how work gets done It's about "the way we do things around here". From the international conversation it was clear to me that culture change is an important consideration for every country represented at the meeting, and why wouldn't it be?  People live in every country, and people are complicated, especially when they organise themselves into groups.  This is because rules and guidelines have to be figured out so that everyone knows what to do.  Usually those rules and guidelines are designed to reflect the values and attitudes and goals that brought about the group enterprise in the first place. 

Unfortunately, unless people are particularly vigilant, this connection between values, attitudes and goals and the associated rules and guidelines can, over time, become less clear.  People follow the rules and guidelines without checking back why they were installed in the first place, and changes happen to the rules and guidelines without checking back to see if such changes make sense in terms of the original goals and values.  this often happens with the best of intentions, for example when new opportunities come along.

Eventually, the prevailing rules and guidelines that are driving people's behaviour have very little connection with the original values, attitudes and goals, and become simply "the way we do things around here".  Just like the proverbial dog that gets wagged by its tail, the rules and guidelines install a new set of values, that people may not have chosen in the first place had they known it would come to this.

Across all kinds of human endeavour, many organisations and systems have this problem.  This includes organisations and systems that support vulnerable people.  For example, I have encountered a number of organisations that began from a value base of wanting to see vulnerable people have a fairer go at what life has to offer.  Move forward a number of years and we find those same organisations providing services that in fact have largely achieved the opposite, by separating people from the wider community, rendering them invisible and much more vulnerable to neglect and abuse.  This is happening today, as we speak, probably at an organisation near where you live.

Yet, despite the increasing signals that we are failing vulnerable people in our communities, we seem to struggle to achieve widespread positive change.  Why?  Culture.   Within our support systems for vulnerable people, the majority of behaviours uphold the status quo, such is the strength of 'the way we do things around here'.  

If we are to achieve genuine helpful changes in the lives of vulnerable people, then paradigms like Individualised funding, National Disability Insurance, Person-Centred Planning, Active Support, and a multitude of others, will not have the impact we might hope for, because by themselves they won't necessarily change culture. 

Culture is changed when enough people make it known that 'the way we do things around here' is not good enough.  Culture also changes when those people in positions of power, responsibility and leadership, have the courage to recognise that the systems they administer are failing people.

These people include the leaders within service agencies, and the leaders within governments, and the leaders within communities.  Such people can play a pivotal role in changing culture.

This is the essence of leadership.  If we are agreed that vulnerable people have the right to choice and control in their lives, to be active contributors to their communities, to grow into rich, valued lives, then every leader in every support system needs to guide their resources towards this, to 'change the way we do things around here'.  They need to do this today and tomorrow and the next day, and so on until it's done.

A hundred leaders

In Control International is an international community of interest on the topic of self-direction in disability support. I’ve just attended the latest meeting, an opportunity to share ideas and experiences that can assist the momentum for helpful change in people’s lives. The meeting covers ideas ranging from the personal to the national.

Participants in these conversations (not limited to these face-to-face meetings) include Australia, Scotland, Czech Republic, England, Japan, Wales, Finland, Ireland, and the US. Some connection has also been established with NZ where there is a very interesting momentum towards self-directed support.

A set of principles guide these connections, one of which is the notion of ‘open source’ sharing. This is a bit like Wikipedia, in that everyone is recognised as having something to contribute to a growing body of knowledge about what it takes to support vulnerable people into good lives. This is very exciting because it means that In Control Australia has access to a rich seam of useful resources from both within Australia and overseas.

It is clear to me that helpful change is often initiated by people sharing their stories and then taking action together. As part of Julia Farr Association’s support to In Control Australia we will shortly be re-developing the In Control Australia website to assist people to access useful information. Within the new website we would like to build a collection of people’s stories, of how individualised (self-directed) funding has helped the person to build the life they want, and also stories from people who don’t yet have a personalised budget but who can describe how they imagine their life would be different if they did.

So I would like to ask all Australian readers of this blog to think about who you know (if not yourself) who might like to tell their story. It’s as easy as talking into a voice recorder, or talking to a computer webcam, or writing the story in a Word document, or telling the story through something like PowerPoint. That recording/file can then be sent to us and we’ll take care of things from there. At all times we will have careful regard to honour the degree of privacy that people ask for.

Given the national enquiry that is taking place about disability insurance, and the various state/territory activities in relation to individualised (self-directed) funding, now is the time for people to tell their stories, so that the focus of a national disability insurance scheme, and the direction of local arrangements, is on how people can be supported into lives of choice and citizenhood.

Someone mentioned to me the other day that, "...I like hearing people's stories but enough already!  I get it, so now tell me how to make change happen".  I can understand that view, and at my agency we have plenty of information that we can connect people with on the 'how'.  I will say this though.  Story-telling remains important, for at least three reasons i can think of.  First, people's stories often contain great wisdom about the 'how', and we just need to tune into that wisdom and grab it.  Second, we need to keep being reminded about why all this is important, and people's stories provide the best kind of reminder.  Third, one of the most potent sources of influence on the design and shape of future disability support arrangements will be the stories that people tell about how their lives change for the better because of a highly personalised approach. 

Imagine having the stories of a hundred vulnerable Australians who have taken control and built a much richer life through personalised funding and assistance.  That would be a very powerful anthology of personal authority and citizenhood, one that could help achieve critical change in the way our governments, service agencies and communities think and feel about disability.

So let's get it done; let's get a hundred stories of a hundred people who have taken leadership in their own lives.  A hundred leaders. 

2010 Election Carnival

Now that the identity of the new Australian government has finally been resolved, I'm sorely tempted to break into a rendition of The Seekers' hit, 'The Carnival Is Over'.  It's been page-turning stuff, and we have been regularly reminded that the election has come down to handfuls of votes.  This has included some comments about the number of 'informal votes' that were cast, where some people showed up to vote but for whatever reason filled out their ballot paper in such a way that it could not be counted as a vote for any particular candidate. 

But if the general election did indeed come down to mere handfuls of votes, has there been any focus on the 'lost' votes of people living with disability?  After all, there are a range of ways that a person might be thwarted in casting their vote.

Casting your vote is the moment when you make your view known.  It is when you have your say.  Unfortunately, it is not so easy to cast your vote if the polling booth is physically inaccessible.  Also, it is not easy to cast your vote if the moment of voting, when you put your mark against a candidate's name, is reliant on you being able to see the ballot sheet, read the words, and direct the pencil towards the box you wish to mark.  If you need any assistance with these, then there goes your privacy, which is not a good look given that this is meant to be a secret ballot.

Of course, people can use a postal vote process so that they don't have to show up to their local polling booth, and that's a useful option, but it should not be the only option.  Every polling booth needs to be genuinely accessible.  It would not seem right if a person has to use a postal vote arrangement (or go somewhere else to cast a vote using special technology) merely because their local polling booth is inaccessible.  

Accessing the local polling booth is important, and not just because of this principle of accessibility.  It is important because voting is one of the most valued, most fought for, and most defended, roles in society.  If we assign high value to the act of voting, then we assign high value to the person doing the voting.  Given that many people living with disability currently don't get a fair go in undertaking valued roles, it is critically important that a person has the option to attend their local polling station and cast their vote, and be seen to do so.  For this to be possible, all polling booths need to be accessible, both in terms of getting in the building and privately casting the vote.

And then there is the matter of enrolment.  I wonder how many adult Australians living with disability are not enrolled to vote because someone else has formed the view that there's no point because the person does not have the capacity to choose.  That's a big decision for someone to take and should not be taken lightly, because who knows for sure the degree of a person's capacity?  In the legislation, reference is made to people being "of unsound mind", but what exactly is an unsound mind and who gets to decide?  IQ scores have often been used as a guide to someone's intellectual capacity, and may even be a consideration to determine an 'unsound mind', but I don't see why a low IQ score should mean you don't get to vote.  Since when did you have to be smart to vote?

One way through this is to ensure that every young Australian, including young Australians living with disability, are automatically enrolled to vote once they reach the age of 18 years.  After all, voting is mandatory and an automatic enrolment will reduce the big rush from first-time voters to register once the Prime Minister has announced an election, many of whom miss out because there is hardly any time to enrol once the announcement is made.

Were Australia to introduce automatic enrolment, this would ensure that all young Australians living with disability are assigned the valued role of Voter, and it just might shift the focus towards how a person might best be supported to make their voting decision.  This might well take more effort than just deciding that the person doesn't have the capacity, but for our society's sake it is worth it.   In this way, we assume the capacity of everyone to cast their vote, which means we assume the capacity of everyone to make a contribution to their community, to belong. In our lives, there are many ways we might move towards a sense of our own contribution, our own value to our communities, our sense of belonging, but for every adult Australian the very first role assigned on reaching adulthood is the right to vote.  May we never understate the importance of this for Australians living with disability, regardless of what we imagine might be the extent of a person's capacity. 

So, as is currently happening in South Australia, I hope that the Australian Electoral Commission reviews the process of the recent national elections, and examines how best to facilitate every Australian's right to vote.  Also, it would be very helpful, indeed vital, if there was a panel of Australians living with disability to advise the Commission on such matters.  Ditto each state and territory.

I can imagine there will be many people out there who might think there are bigger issues to deal with than this.  Why bang on about voting when some people can't even get reliable assistance to get out of bed in the morning?  This is an understandable view, but bear in mind the intensity of the post-election negotiations we have all just witnessed, where several 'independents' were able to advance a number of causes favourable to their local constituencies.  If we had a comprehensive set of arrangements in place that uphold the right of Australians living with disability to vote, then the next time there is a hung Parliament, it may just be that the focus of the negotiations includes the interests of voters living with disability.