I'm late and I've brought a note

My apologies for the time gap between recent blogs.  I’m very late in posting the next blog so, just like the school student whose homework is late, I’ve brought a note.

I share the following 'Julia Farr update' with you because we value your feedback on the work we are doing, and because I want to assure you, the twelve hundred (and counting)  readers of Purple Orange, that there's much more blogging to come.

It has been an intense start to 2010 at Julia Farr group, and there has been little opportunity for reflection.  We have been active on a number of fronts.  In terms of policy work, our focus was on thinking through and amplifying the policy issues in the lead up to the SA state election in March.  Our focus has now shifted to the preparation of material that we hope will be helpful to several government ‘thinks’, including the senate enquiry into the planning and support needs of people living with disability as they age, the SA government’s reference to the Social Inclusion board for a blueprint for disability support, and the Productivity Commission’s work on the future funding of disability support (including considerations of a National Disability Insurance Scheme) and its recently announced public enquiry into Australia’s aged care system.

In terms of publications, we spent some time completing and releasing our latest publications, relating to the Tell Us survey and also an ‘access to GPs’ research report.

In terms of events, we have been heavily involved in two very successful 2-day workshops, one with UK’s Jenny Pitts and NZ’s Penny Hambleton on building personalised supports, and the other with US’s John O’Brien and Connie Lyle O’Brien on connecting into community.  We are also currently running this year’s Loop program, which has visited Adelaide and Mt Gambier so far, with other country venues still to come.  Other events are also in the pipeline.

In terms of research, we are currently developing a model of citizenhood support that I think will help people and agencies to focus on what really counts in people’s lives.  In addition we continue our work on the nature of safeguards and how agencies can move away from restrictive practices.  We have also recently launched the new, bigger and better Tell Us survey, which is going national.

We are also exploring what can assist school students living with disability to have better chances of a successful mainstream education, and one of the early results of this has been the emergence of a youth mentorship initiative, which we host.

We are also busy at the Julia Farr Housing Association, with a number of building projects underway, and where the principles of access and personal authority are always at the forefront of our mind. 

And then there are the many daily transactions we have with people, partly because of the trust funds that we administer, partly because of our very busy conference venue, and partly because of our work convening the national movement called In Control Australia.

So it’s been a very busy time, especially given there are only seven staff at the Julia Farr group, three of whom are part-time.

BUT what this means is that there is heaps to blog about, so watch this space.

How To Vote

The state elections in Tasmania and South Australia are nearly here.  By this time next week (or maybe a little longer if there is a hung Parliament) we will know who will be leading the decision-making in each of these state's public policy for the next four years.  In the case of people living with disability, indeed anyone living with additional vulnerability, this is particularly important.  We cannot yet say that Australia is a country where every citizen gets a fair go at a good life.

So if you care about this issue, it makes sense to cast your vote in a way that can help (I know that some people can get a little jaded about the vote, along the lines of 'what's the point, nothing will change'.  But while it's true that yours is but one vote among many, the 'many' is still entirely comprised of individual votes. So ultimately your vote truly counts).

But how to choose which party/person to vote for?

Neither I nor the Julia Farr Association profess any formal political affiliation, so I'm not about to tell you who to vote for.  However, it may help to think the matter through in the same way as any other proposition to buy into something.  

For example, if I want to buy a new appliance in my price range, such as a vacuum cleaner, I will want to know what it will do to make my life a little better.  The considerations could include sustainability (how long will it last?), goodness-of-fit (does it do what it actually says it will do,and how will I know?), reliability (will it work without my having to cross my fingers each time?), the 'me' factor (is it the look that I want?  Does it fit my lifestyle?), and some measure of assurance to give me confidence I'm not buying a dud (is there a warranty?).  If I apply these considerations to each of the available vacuum cleaners, then the one that has the strongest showing is the one that I might buy.

I am confident that many of us apply this sort of thinking (let's call this the Suction Test) to the purchasing choices we make, so why not apply it to the voting choices we make also?

Given the fact that many people living with disability remain shut out from a good life, I think it reasonable, necessary even, to expect every current and aspiring Parliamentarian, and party, to have a formal policy on disability.  I therefore recommend that voters apply the Suction Test in each case.

To do this, you first need to familiarise yourself with each party's policy.  For South Australia, here are click links, in alphabetical order, to the disability policy of Democrats, Dignity for Disability, Family First, Greens, Labor, and Liberals.  The only thing I could find from the National Party was their National Party Social Justice policy as part of their overall 2009 policy document.

For Tasmania, I found it much harder to find Tasmania-specific disability policies. Here are click links to the disability policy of Family First,  and Liberals.  I couldn't find anything for Labor, Nationals or the Democrats, and all I could find from the Greens was the Greens' Social Inclusion Policy.

In each case, you could apply the Suction Test by posing the following questions:

Sustainability: will the policy bring lasting benefit?
Goodness-of-fit: does the policy make sense to you, in terms of matching the issues in the disability sector, or is it missing some things? Is it likely that the policy can achieve what it says it will achieve? Does the policy contain clear and tangible measures to assess its impact, or is it fuzzy? 
Reliability: can the policy be relied upon to be fair to people and to maintain an honourable relationship with people seeking assistance?  Does the policy mean that people can go about their daily lives without getting unpleasant surprises about support levels/availability? Can the policy be relied upon to adequately reflect the UN Convention on the Rights of Disabled Persons?
Me factor: does the policy enable people to develop customised support arrangements so that they can lives of choice?
Assurance: what is the degree of warranty, the extent to which the party is guaranteeing that it will do what the policy promises?

Whichever party's disability policy has the best showing against the Suction Test can maybe help you to decide how to vote this weekend.  Good luck with your choice.

Vale, Dr Paul Collier

Shortly after I arrived in South Australia in 2004, I was introduced to Dr Paul Collier.  My first impressions were that this was a man with a very deep personal experience of disability, having lived with quadriplegia for over twenty years.  That this was a man who had a clear sense of what was possible (for example he had been supported via individualised funding when he was living and studying in the UK, and had found the experience entirely to his liking).  That this was a man with restless passion about people living with disability having the right to live a decent life, a good life. That this was an intelligent man, a charming man.  

These first impressions never left me. 

Paul was a smart guy.  His was no honorary doctorate.  It was easy to forget that Paul was an accomplished historian, given that many of us knew Paul mainly through his role as the disability activist.  As an activist, Paul would call it like it is, but my experience was that he did so always with a heartfelt courtesy and regard for people.

The more I got to know Paul, the less I was aware of his disability, because his person-hood always shone through.  Paul never spoke to me of his daily experience living with quadriplegia, and I remained entirely oblivious to the logistical challenges that must have shaped Paul's daily life.

Paul radiated an energy that was enduring, so much so that I was profoundly shocked to hear of his demise.  I figured he had many, many years ahead of him.  With his death, Paul is the latest in a number of fine people who have inspired me with their passion and perspective, and who have passed away with their vision largely frustrated.  It doesn't seem fair, and it makes me angry and sad.

Paul, I wish you were still here. You will be deeply missed by those who love you, and your voice will be deeply missed by those on whose behalf you spoke.

Rest well.

ABC New Inventors show: how to snatch defeat from the jaws of victory

The ABC's New Inventors show (for their website, click here) was on last night, and this week they were running a 'special', funnily enough on the topic of disability.  For the uninitiated, the New Inventors format is a studio show where three different inventions are showcased each week before a panel of three judges.  At the close of the program the judges do what they're there to do, which is to judge and determine a winner, who then goes on to be considered for the Inventor of the Year.  Viewers also get the chance to be involved, by each week voting for their favourite invention of the three, an award called the People's Choice (usually prefaced by a phrase that is something along the lines of, 'did the judges get it right?  You decide').

So that's how the show works.  Occasionally they have 'special episodes' where the inventions cover a common theme.  The previous special was on firefighting, and this time it was looking at inventions that speciflcally relate to people's experience of disability.  

The ABC started well, by titling the episode 'Access and Ability'. Very affirming, focusing on the positive.  The language used throughout the episode was also affirming.  Bravo ABC.  Also, the three guest judges all had a personal experience of disability.  Well done again, ABC.  

Things were going so well.  The three inventions were showcased - one covering an adapted dune buggy that could be entirely hand-controlled through an accelerating and braking steering wheel, a second invention involving open source, totally portable, screen-reading software, and the third invention involving a lightweight, no-axle manual wheelchair that is designed to also be used as a shower/toilet chair - and there was much useful commentary about the aspects and considerations in each case.

And then the show ended.  Without the judging.  What was that about?  I went to the ABC's live forum (to go there, click here) which was running after the show and where anyone can put a question or comment about program content.  Sure enough, someone had raised a query about how come there was no judging.

The ABC moderator replied by saying that,

"the New Inventors specials are about showcasing innovation in particular areas and are not part of the regular competition. All inventions featured as part of the special undergo the same rigorous research and checks, but are not in competition for the 2010 Inventor of the Year."

The immediate practical question here is, why not?  Just because they have a theme show, the inventions are still inventions.  There is still the rigorous research, the rigorous checks.

So of course, someone points out the effect of the ABC's approach is to exclude.  To which our ABC moderator replied, 

 "as stated earlier The New Inventors specials are about showcasing innovation in particular areas and are not part of the regular competition. This has been the case for all inventions featured in our previous specials such as 'Disaster', 'Fighting Fire' and 'Future'. All inventors were aware of this before they agreed to appear on the program."

In repeating the same point, the moderator has missed the real point that was made, that the effect of their approach has been to exclude, to inadvertently reinforce the stereotypical view that the topic of disability lies outside the mainstream.  And so what if the inventors were aware of the no-judging' before they agreed to appear. What inventor would turn down the opportunity to showcase their invention on prime time television?  Their understandable assent to the special format does not make the format ok.

As I said last night on the live forum, I don't think the ABC moderator's reply is enough.  The program was going so well, and then the ABC snatches defeat from the jaws of victory by not having a winner.  The winning inventor does not therefore get the opportunity to compete for the Inventor of the Year, and so there is no more exposure for the 'access and ability' theme and invention, which in turn means no further opportunity to educate a willing public (well at least that part of the public who are enthusiastic viewers of this program) about the practicalities that can assist a person living with disability to get a fair go at what life has to offer.

Also, by not having a moment of judging, there was no corresponding Peoples Choice award, the chance for a multitude of viewers to give further thought to the inventions and consider which one they thought was particularly strong. What an opportunity to keep the theme of 'access and ability' uppermost in people's minds for a little longer. What an opportunity lost.

I can hope that the ABC didn't intend to be so patronizing, but that is the unfortunate effect.  This omission serves to reinforce the idea that people living with disability (and topics that are relevant to their lives) are to be treated differently from everyone else. It even diminished the guest judges, by not giving them the opportunity to make a judgment (isn't that what a judge is meant to do, or is this just pretend-judging for folk living with disability?).

The ABC may indeed have rules about program 'specials' but in this case there have been unintended, adverse consequences that warrant further reflection by the ABC.  

In closing, I don't want to totally bring down the ABC's efforts, because it was good to have a program that placed 'access and ability' front and centre.  It's just that such good work can so easily be squandered.  Apparently, the inventor Thomas Edison said that, 

"Genius is one percent inspiration, ninety-nine percent perspiration". 

So maybe the ABC can rightly be applauded for having the inspiration to do this particular show, and can rightly be counseled for not putting enough perspiration into the details.

Not-For-Profit? Then what? Part Two

This the second of two related blog postings arising out of my attendance last week at the 'Future of Not-For-Profits' forum organised by Anglicare SA and Flinders University.  In the first posting, I focused on the 'who', by talking about the beneficiaries of not-for-profits, and the importance of ensuring that any conversation about the future of a not-for-profit entity should involve those people for whom the entity exists.

This second posting now looks at the 'what' of not-for-profits. So let's not beat about the bush.  I'm going to attempt an answer to the question posed in the title, If not for profit, then what?

As was pointed out by a participant at the forum,  it seems strange to label a whole class of organisations using a term that's negative.  The term 'not-for-profit' explains what the entity isn't , not what the entity is.  At the forum, the speaker from the Productivity Commission pointed out that finding a term that worked for all the different types of entity was a challenge, because every proposed term seemed to attract concern from someone that it didn't quite convey what they were about; terms that seemed to work for community services didn't necessarily work for the arts, which didn't necessarily work for environment and conservation, which didn't necessarily work for sports, and so on.

However, I think there is a term that can work.  Before the reveal, let's be clear about who we're talking about.  We're not talking about government services (the government sector), and we're not talking about any enterprise that is primarily designed to deliver a financial return to its owners (the 'for-profit' sector).  We're talking about everyone else, where the enterprise is designed to deliver a benefit that is not about financial profit (hence the current term, 'not-for-profit' sector).  Sometimes the phrase 'third sector' is used.  However it has limited utility, because it simply says that a 'third' sector' entity is not  government and its not pursuing financial profit.  It doesn't adequately convey role or purpose.

I therefore believe that not-for-profit agencies be called social profit agencies instead (this is not a brand new idea, as you'll find if you tap the phrase into an online search engine, though it is something that I have written about elsewhere a decade ago).  Profit is a good word because it emphasises a gain, so why deny it in the name.  It's simply that for such organisations, 'profit' is not primarily measured in financial terms.  It is measured in terms of the benefits (the gains) to the recipients or members, be such benefit a community service, new skills, sports participation, artistic excellence, conservation, neighbourhood or cultural or spiritual affiliation, and so on.  All of these endeavours are intended to yield a benefit or gain to the target beneficiaries.  Hence they represent a social profit.

To me it seems to fit the wide range of not-for-profit' enterprises I can think of, so why not use it, at least until something better comes along.  Also, by shifting from 'not-for-profit' to 'social profit' we place emphasis on the benefits the organisation is trying to deliver, and to whom.  This in turn demands social profit agencies be crystal-clear on such matters, and how the organisation's impact might primarily be measured; not in terms of money received and managed , or the numbers of clients served, or the numbers of services and staff, but in terms of the difference these efforts have made - their impact on people's lives.  The social gain. The social profit.

It is important for agencies to think about their intended social profit, to state it clearly, and then to check to make sure that none of their current or proposed activities are working against that social profit.  For example, there is little use in talking about the social profit of inclusion if the agency then runs activities that exclude people from community.  Similarly, there is little use in taking about the social profit of choice if the agency doesn't provide much real choice.  Far better for agencies to be honest about what they are prepared to deliver.  That way, people looking for support can shop around and reduce the chances of disappointment.

Fundraising also needs to be audited, once an agency has clarified its intended social profit.  For example, in my life so far, I have encountered many agencies that couch their goals, their social profit, in terms of ideas around people having choice, living lives that are full of windswept interest, and being active citizens. And yet, when such agencies engage in fundraising activities (in pursuit of sustainability of course) they have a disturbing tendency to portray their intended beneficiaries, for example people living with disability, as objects of pity, whose wellbeing critically depends on Joe Public making a regular direct debit donation or dropping a coin into a collection can.

This drives me nuts, for two principal reasons.  First, if an agency's stated goals, its intended social profit, are in some way about supporting people into a rich, active life, then the agency does its beneficiaries a profound disservice by then portraying them as people who are not capable of achieving or sustaining this unless someone ponies up some money. It's easy to present people living with disability as suffering, struggling, as a focus for pathos, because of course this makes it more likely that Joe Public will give money.  But in so doing, we are training Joe Public to assume that people living with disability cannot be successful without such patronage.

The second big problem with this is that we are training Joe Public to believe that giving money is the only thing that needs to be done to make things better, that his/her role in fixing the issue starts and ends with giving money.  This is a mistake, and a catastrophic one at that.  Money does not guarantee people a good life, especially if it is then used, ironically, to provide services that work against the intended social profit. 

To truly assist people into rich lives, our neighbourhoods need to be inclusive and welcoming so that people naturally move into lifestyles characterised by freely given association, by acquaintanceship, by friendship.  That doesn't necessarily come from people's money; it comes from people's time and people's mindfulness and people's heart.

This in turn will provide a fresh perspective on the issue of agency sustainability.

Not-For-Profit? Then what? Part One

Yesterday I had the good fortune to be involved in a forum, organised by Anglicare SA and Flinders University, that explored what the future might hold for Not-For-Profit organisations (from here on referred as NFPs). It was a day rich with perspective and discussion, including speakers with local, national and international experience.  People had the opportunity to consider where not-for-profit effort has come from, where it is now and where it might be in the future.

The themes were familiar, as you would expect if you have spent time within the NFP sector.  NFPs typically emerge through the efforts of one or more citizens, whose concern about an issue, together with a view about how things could be, invoke action.  That action is then formally organised, and the NFP entity is created.  In many communities there is a rich history of such endeavour.

As the NFP then goes about its business seeking to make a difference, it will also need to think about its own sustainability.  And therein lies a lifelong journey.  NFPs constantly have to wrestle with issues of sustainability, be it in terms of leadership momentum and renewal, knowledge capital, political change, technological advances, societal trends, systems compliance and, of course, money.

There is a lot to preoccupy your average NFP which is why yesterday's forum was so engaging.  The conversation was characterised by enthusiasm and anxiety, optimism and pessimism (and even fatalism), in fairly equal measures.

Maybe this is simply the nature of things for NFPs, where the very fact of impermanence demands an ongoing focus on dynamic balance and renewal.  Put more simply, if you stop peddling the bicycle, sooner or later you will fall off.

But if you focus too much on how the peddling is going, and whether the chain is adequately oiled, then you are in danger of not looking where you are going, which was why you got on the bicycle in the first place. The trap for every NFP, once it's formed, is that the ongoing need to think about issues of sustainability can result in the NFP taking its eye off the purpose it was set up in the first place.  For those NFPs in community service, this purpose is usually to deliver some kind of benefit to a target group of beneficiaries, be they local residents, people living with disability, people who are homeless, people with a particular health issue, people with a common interest, and so on.  However, there are many NFP organisations who are now involved in quite different activities to those they started out with, either because new opportunities presented themselves, or because of the need to deviate because of sustainability issues.  Such movement is not always purely in line with the original purpose of the organisation.

In these ways, the NFP can lose sight of its original passion and vision. Suddenly big is good, and bigger is better.  In pursuit of sustainability and scaling up, the view of the target beneficiary can be overlooked.  At which point the NFP has lost its mojo.

So let us remind ourselves that the reason why NFPs exist, particularly in community services, is to bring benefit to a particular section of our community or citizenry.  Therefore any question about a particular NFP's sustainability must be framed in the context of the needs and aspirations of that section, and NOT of the NFP itself.  Otherwise there is a danger that the NFP is looking after its own organisational needs at the expense of its target beneficiaries.  This is a perversion.

And to help with any confusion about who the beneficiaries are, the beneficiaries are those who are mentioned in the NFP's constitution, as part of the organisation's objects.  The reason why NFPs appear to be so called is because they do not exist to deliver a financial profit back to their stakeholders, but instead exist to deliver a benefit to the beneficiaries.

Not-For-Profit means For-Our-Beneficiaries. 

It must surely follow that if the NFP is to have any meaningful discussion about its sustainability, the beneficiaries need to be in the conversation, because their circumstances provide the context.

So in an otherwise engaging and successful day (with thanks again to Anglicare SA and Flinders University for a great effort), my one main recommendation for any similar forum in the future is that it ensure there are voices in the room from people who are the intended beneficiaries of NFP efforts.  The conversation will bear even richer fruit as a result.

Why did I start out this posting with a picture of nuns with guns?  Well, mainly because it's not often you see nuns with guns (or am I just not getting out enough?).  The picture also, in a strange way, echoes a sense of mission and determination, which seemed fitting for a blog posting about NFPs.

But it also got me thinking about how NFPs raise money (presumably not at gunpoint), and for what purpose if not profit?  Watch this space for 'Not-For-Profit? Then what? Part Two'.  

Days and Rights

My last blog entry was adorned with a santa hat.  It's nearly February now so Purple Orange is really overdue for a fresh posting.  This lapse reflects the apparent fact that all of Australia goes into summer hibernation from Christmas through to late January (this of course would be the optimal time for New Zealand to come in and take over the country while no one's looking, but for the fact that NZ is enjoying the same summer siesta, only with thicker socks).

The country returns to business, for some with a patriotic hangover, the day after Australia Day.  Though I wasn't born in Australia I'm proud to live here, and I am attracted to this idea of a day of national celebration.  However, I humbly note that this day is not without its controversy, given the date reflects the landing of the first fleet which, for many Australians, is a date that marks a period of oppression, pain, loss, exclusion and alienation.

I can't help but wonder whether, in the pursuit of a more inclusive sense of nationhood, it perhaps might be better to put a national day somewhere else in the calendar, to a date that every Australian feels can be celebrated joyously.

And what is the nature of celebration?  Forgetting for a moment that the current date marks the arrival of the first fleet, the sentiment of Australia Day seems to be about a sense of national pride, good living, a feeling of belonging.  Well, wherever the day might appear in the calendar, such sentiments can only truly be celebrated if they apply to everyone.  For many Australians living with disability, there is not yet much to celebrate in terms of good living or a sense of belonging. So it seems difficult to celebrate such sentiments when they do not yet apply to everyone (its a bit like celebrating victory before the game is actually won - disastrously premature).  The Australian Government's 2009 publication Shut Out (click here for a copy) gives clear testimony to the continued experience of poverty and exclusion by many Australians living with disability.  Can we really afford the luxury of such national celebration when so many Australians live a struggle that is not of their making? 

There remains hope. The United Nations Convention on the Rights of Persons with Disabilities (click here for a copy) reflects the momentum of the rights movement worldwide, and is an important milestone in the pursuit of social justice, a fair go, for people living with disability.  However, even though Australia has ratified the Convention, the fact is that Australia is the only developed nation not to have a national Bill of Rights, which is a list of the rights that are considered by a nation to be important and essential. The purpose of such a bill is to protect these rights against infringement. 

So here's a thought.  Were Australia to enshrine a set of human rights into its national legislation, rights that echo the above UN Convention, then maybe that would be the moment when Australia truly commits to the value and potential of its diverse citizenry.  Such a moment could, we may hope, herald a genuine uplift in the life chances for people living with disability.  

If so, Australia will truly have matured as a nation, and the date that such legislation was passed would be a most worthy day for annual celebration by everyone.