Naming values, and the values of names

Being immersed in two projects funded by the NDIS Practical Design Fund, it has been harder than usual to keep up with the rapidly developing NDIS scene. However, last week's government announcement that the NDIS will be known as Disability Care Australia warrants a response, however late.

The announcement seems to have come as a surprise to many, including us, though we have been told the disability sector peak bodies were briefed on the process and given the opportunity to comment.

It is no surprise that some people might see the upside of a word like ‘care’. At its broadest level it carries meaning about compassion, about connection, and who doesn’t want some of that in their lives. The British media yesterday reported the UK government’s response to a public enquiry about health, concluding that the National Health Service needs more compassionate care. I can entirely see how a comparable sentiment may have brought the word ‘care’ to the list of possible names for the National Disability Insurance Scheme.

But this is a word that has layers of meaning, making it a problematic choice for the scheme’s name. And I encourage people not to make the mistake of assuming that name selection is a minor issue, a sideshow that has little consequence given the other important considerations about the scheme’s design and implementation. The name is a brand, intended to convey the values of the scheme. As such it is the first and most telling signal of the scheme’s culture. More on this later.

The difficulty of using the word care is well summed up in the following excerpt from Craig Wallace’s opinion piece for the ABC's Ramp Up:

“Instead of choosing a name that speaks to a new world, of rights, choice, inclusion and control, with people at the centre, we have a moniker that puts people with disability to one side - as people to be cared for. It spells more of the same.”

Hitting a similar vein, the National Council on Intellectual Disability posed the question, “Where is the language of the UN Convention on the Rights of Persons with Disabilities?”

Further, one Facebook contributor to the debate suggested the only way the use of the word care could be less unacceptable would be if it were applied to every Commonwealth government department, for example the Department of Infrastructure and Transport Care, the Department of Prime Minister and Cabinet Care, the Department of Foreign Affairs and Trade Care etc.

In its defence, the Commonwealth government might argue the name Disability Care Australia was a good fit with existing public funding brands like Medicare. Understandable, then, that the government might wish to build a brand stable. However, there remains the question on whether it is the right name for its target beneficiaries – people within the disability community.

In this regard, and in addition to consulting with disability peak bodies, we understand the government commissioned a series of focus groups comprising people living with disability and their families from a range of communities around Australia, and that there was good support for the name Disability Care Australia.

If this was the clincher (and it would have to, because the ‘brand stable’ argument isn’t enough by itself to justify the adoption of this tricky word ‘care’), we might seek to deepen our understanding as to the nature of the focus group participants. One might reasonably assume the focus group membership was derived using sampling techniques typical of market research companies, so that the focus groups bring a range of perspectives typical of Australia's disability community.

If true, fair enough, but focus groups are typically small so there are limits on what a focus group can tell you about trends across a broader population, especially the complex, multi-layered population called the disability community. But let’s just stay a little longer with the focus group issue.

I don’t know the focus group research agency’s identity so I am drawn to this next question: what did that agency truly understand about disability community demographics. It may have known enough to look for focus group participants with, among other things, perspectives covering person and family, metropolitan, regional and rural Australia, and the differing causes or types of disability. But this isn’t enough. However small or large the consultation, a demographic we cannot afford to overlook is the range of experiences that different people have in accessing support. What I mean by this is there are people within the disability community who have had differing types of experience with the disability service system. This includes people who have been ‘done to’ by the system, rendered passive service recipients, neglected or worse, and where the notion of care has become synonymous with an absence of control and choice, of being mis-served by paid carers who don’t.

It is not unusual to find that this particular demographic of painful service experience comprises people with greater degrees of disability and vulnerability, with less voice heard. These are the people who arguably have the greatest moral stake in the new system, because they are often the most distant from good life chances. These are the people we might hope can make the greatest advances in their life chances as a result of the changes.

If this is true, and I believe it to be, then because of the damage done in its name to some of those with the greatest stake in the success of the new system, the word ‘care’ should not have made the long-list of naming options, let alone the focus group short-list, let along being anointed as the chosen one.

The NDIS reflects a set of values the government wishes to advance and uphold; values around control, choice, participation in community life and participation in the economy. For values to truly come alive in any field of human endeavour, every decision and every action needs to be coherent and consistent with those values. Otherwise, the values will die the death of a thousand cuts, where a sequence of misaligned decisions and actions, however well-intentioned, serve to wound the intended values-based culture.

Ultimately, the success of the NDIS hinges on its capacity to live out the stated values, to express a values-based culture that advances people’s chances of a good life. Every decision and action taken will either contribute to, or undermine, the emergence of that values-based culture. Choosing a new name for the scheme is one such decision. Because of the complex and diverse perceptions of the word ‘care’, including for some people a profound negative emotional weight, it doesn’t present itself as an obvious choice to encompass the scheme and its values, and I don’t think the prospects are good for its rehabilitation.

I remain hopeful that the government – indeed the various governments including bipartisan support – truly wish to see a paradigm shift in the way people living with disability are supported, in line with our nation’s commitment to the UN Convention and the values underpinning it. If so, choosing a name for the NDIS warrants further reflection, in the hope that a different name emerges that better captures the values we want the new system to live by.

An important day needs important commitments

It is December 3rd, again, which means it is International Day of People with Disability.  As I've mentioned in previous years, having just one day to think about disability seems odd, especially if the rest of the time the topic is then far from most people's attention.

But this year has been different in Australia, with disability making a regular appearance in the news because of the work developing a National Disability Insurance Scheme.

So this year's 'special' day is perhaps an opportunity to reflect on the importance of how ideas and values are translated into accountable actions.

This morning Purple Orange was at the Enfield community centre in Adelaide, where the local council, the city of Port Adelaide Enfield, launched its five year Disability Discrimination Action Plan.

It felt right the council chose this day, International Day of People with Disability, because their new action plan goes beyond considerations of access to establish a broader context of inclusion. The plan includes a range of important access considerations– such as ramps, walkways, building features and restrooms –but also goes further. It looks at the role of the disability community in council decisions that affect people living with disability. It looks at workforce issues, not just in terms of awareness-raising but also how best to maximise opportunities for people living with disability to join the council workforce. It looks at how the council can serve its citizens so everyone feels included in that community, as authentic members of the club called City of Port Adelaide Enfield.

Purple Orange had the privilege of working alongside Port Adelaide Enfield in developing this plan. We assisted their public consultation, and provided support to think through the key issues. The plan includes a range of practical initiatives to help the council advance the goal of an inclusive community.  There is good energy in the council to make things happen.

International Day of People with Disability represents an opportunity for people and communities to commit to accountable actions in support of people living with disability getting a fair go at what life has to offer. Port Adelaide Enfield's Disability Discrimination Action Plan sends an important positive signal for local people living with disability.

for a copy of the plan, click here.

 

Currently, Purple Orange is working with several councils on how their services might help advance the life chances for people living with disability.  In this work, it is clear to us that an important ingredient is the passion and commitment of key officers involved, and their inclination to take action in support of positive changes.

 

Such values-based personal leadership can help real momentum to build, and its great to see it in the work of local councils.

 

 

Everything you wanted to know about intimacy (well, maybe)

I am posting this to the blog in case some people missed this when it was released by our officde yesterday.  I welcome your comments.

This week there has been media coverage in South Australia and elsewhere relating to the possible decriminalisation of the sex industry in South Australia. This has included the assertion that decriminalisation will be particularly helpful to people living with disability because of the potential benefits of their using the sex industry.

The JFA Purple Orange responded to media enquiries but we don't think the resulting coverage adequately reflected our view, hence this posting that consders some of the issues when discussing disability nd the sex industry.

The Principle of a Fair Go

As our subscribers will know, we believe that people living with disability should be able to access the same life chances as other citizens. If the sex industry is decriminalised so that adult Australians can access it then this logically and properly includes adult Australians living with disability.

For some people living with disability wishing to exercise choice about relationships and intimacy, this can present several challenges.  For example a significant proportion of the disability community are people living with intellectual disability.  There is a question about who would give consent on matters relating to intimacy. On what basis would someone support a person with their decision-making about relationships and intimacy?

A second kind of challenge is where a person might need practical assistance to take action as a result of their choice. This means for example that a person living with physical disability might need assistance from his or her disability support agency to make a transaction and this might include a transaction in the sex industry. It is not clear, if the sex industry were decriminalised, whether all disability support agencies would routinely support such transactions.

The issue is not about whether a person living with disability is allowed to make choices about relationships and intimacy; it is about how that person is supported to make and enact those choices.

The Issue of Therapy

One argument that is put forward in support of people living with disability accessing the sex industry is that it has therapeutic value. The problem with this argument is that it maintains a medical model perspective on the lives of people living with disability. There are many things in our lives that are enjoyable and bring benefit, for example going to the beach, sharing a meal with friends, watching the sun come up, being congratulated for a job well done, falling in love, earning a living wage, attending a festival event, helping another person, spending time with family, watching our favourite sports team win, and shared intimacy. We may describe such experiences a number of ways; ‘fun’, ‘rewarding’, ‘beautiful’, ‘uplifting’, ‘awesome’ and so on. Typically we won't reach for the work ‘therapeutic’ as our first choice, as in “thank you for the barbeque, it was very therapeutic".

People don't medicalise their daily life experiences so it doesn't seem right that we should do so for people living with disability.

The Issue of Paid Sex

Across a range of jurisdictions there has been no shortage of material on the topic of disability and the sex industry. For example New Zealand MP Tim Barnett, in his 2007 paper on the consequences of the 2003 legislation that decriminalised the sex industry in New Zealand, noted that one of the customer demographics was people living with disability. If nothing else, such commentary helps confirm that people living with disability are actually having sex, which might come as a surprising but necessary revelation to those members of our community who have a problem with this.

The danger with the periodic focus on disability in the sex industry is it may create the impression the only way a person living with disability can have sex is if he or she pays for it.  Presumably this is because some people assume the person's disability renders that person unattractive to every potential partner out there in community life. This doesn't seem fair or true.

One possibility why some people living with disability pursue paid intimacy might be because there are barriers, often literally, to meeting people. For many people who have an intimate partner in their life, they may have met this person at work, at a club, while travelling or on holiday, at the beach, in the library, at the pub, during shared study, and so on.

The chances of meeting someone are significantly reduced if you can't access these opportunities, for example because the venue is inaccessible, or because you are unemployed, or because you don't have a living wage with which to make lifestyle choices, or because you don't have a place to call your own where, with privacy, you can welcome someone into your home and your life.

If we were to properly resolve such issues of access and fair go, we might find that the topic of disability and the sex industry becomes less sensational because people have access to a range of possibilities for discovering friendship and intimacy. Try this 2010 article in the Guardian for more on this.

The Darker Side

Decriminalised or not, the sex industry currently is not a strong socially valued part of our economy. Whether it is fair or not, Sex Worker is not a profession you are likely to see high up on the list of trusted professions, and people are unlikely to include in their résumé list of hobbies that they like to purchase sex.  Many people in our community appear to have a personal moral struggle with the idea of the sex industry, possibly seeing the industry as morally questionable and that, by association, the people involved in that industry are morally questionable, weak or even deviant.   In this way, by linking disability with the sex industry, people living with disability might be viewed as morally questionable or people living with disability might be viewed as morally questionable or deviant because they have been associated with an industry

This unfortunate and unreasonable habit of linking disability with deviance has been documented elsewhere, for example here, and it has been argued this has been at least a partial factor in the creation of institutional services.

While it is important to uphold the rights of people living with disability to access the same opportunities as other citizens, in this case access to the sex industry, there is a risk that this will reinforce the possible view held by some members of the community that people living with disability are morally questionable, and therefore of lower social value in our community, because they want to be involved in paid sex.

The Question of Who Pays

The subject of sex industry services has come up more than once when thinking about an Individualised (self-directed) Funding approach to disability support. In any Individualised Funding mechanism there are at least some rules about what people can and cannot spend their funds on.   It is not unusual for the people in charge of public funds to get very nervous at the idea that a person might use some of their disability support funding to purchase sex services.

Our view is that this relates to at least a couple of bigger issues.  First, most people of working age have access to at least some disposable income because they are in fair waged employment.   If this was the case for people living with disability, then the decision to purchase sex services would be a personal matter based on their personal income, and would not be relevant to any Individualised Funding.

Second, it is entirely possible that many people living with disability are using part of their disposable income to purchase items (such as incontinence support, mobility support etc) that arguably should be met through fairer levels of disability support funding.  If this were to happen, it would free up some of the person’s disposable income which then is available to support other choices.

Finally...

Sex is a topic that many people find dfficult to talk about.  But when we do talk about it, may we do so in ways that do not set people living with disaiblity apart from other citizens.  Sex can be about many things - desire, fun, expression of love, even business -  which makes it relevant to all human beings.

We welcome your feedback on this posting.

Will the earth move?

image by  'Leagun' www.sxc.hu

As the disability community watches and waits for the design and implementation of a National Disability Insurance Scheme, opposition leader Tony Abbott did no one any favours when he opined last month that the proposed scheme was an aspirational goal that should only be realised when the Australian economy was in strong surplus.

This brought an understandable reaction from many people within the disability community, and also more recently from members of the Liberal Party’s Parliamentary caucus.

Notwithstanding such pushback, there appears to be increased fretting in political circles about the estimated funding shortfall for the scheme, which rose from $6 billion to over $8 billion as a result of the recent Fair Work Australia ruling on pay equity for staff in the social and community services sector.  

This means the national disability debate could become framed by the timing of the Australian economy achieving surplus, and how aggressive each party’s first budget will be to deliver this surplus should they win government in 2013. 

It is wrong to place increased disability support funding in the context of a surplus economy. Increased funding is intended to advance people's reasonable expectations of ordinary valued life chances. In other words, it is about people getting a fair go, based on every person's inherent value and potential as a human being.

This includes the value of a person having authorship of their own life, accessing opportunities on the same basis as other people, being able to participate in community life, and having authentic active membership of the club called Australia. 

Upholding and advancing these values should not be conditional on an economy in surplus.  And if a National Disability Insurance Scheme is designed to uphold these values, its introduction should be based not on the arrival of surplus but on the principle of doing the right thing.

For contrast, let us look to our neighbours New Zealand.  Despite having a deficit economy that will be around for at least the next several years, the New Zealand government, with bipartisan support, has committed over 8 billion dollars to help rebuild people's lives following the earthquakes in Christchurch.

Some people might argue this is not a helpful comparison because a response to the consequences of an earthquake in New Zealand is different to a response to the consequences of living with disability in Australia.  I disagree, because there are clear similarities.

Both situations involve hundreds of thousands of citizens living with an issue that has had a dramatic impact on their prospects for housing, employment, daily living, health, and participation in community life.

Both situations will cost billions of dollars in remedies, to build or rebuild the capacity of people and communities.

Both siutations involve remedies that will lead to a positive stimulus for the economy.

Both situations are taking place in countries that currently have a deficit economy.

Both situations demand action now, because it would be wrong to leave people in such desperate circumstances.

New Zealand has taken action.  Australia has not.

Be it the large jolt of a high magnitude earthquake or the relentless multi-generational rumble of exclusion and discrimination, the urgency of the imperative is similar.  We cannot wait for a surplus economy before we do the right thing by the Australian disability community.  

Relatively Speaking

Sons and Mothers is the latest offering from the No Strings Attached Theatre Company. Part of the 2012 Adelaide Fringe Festival, the show explores the relationship between mother and son, through the lens of seven men.

Devised and led by the creative Alirio Zavarce, the show opened its run on Saturday 25 February at Adelaide's Queens Theatre, a good location for this weighty, industrial scale topic. The weather had turned the venue into 'sauna theatre', and it would have been easy to be put off by the heat. However, like a Native American sweatlodge or a hot yoga class, the temperature added a dimension to the audience's relationship with the performance, a wrap of maternal closeness.

Six of the actors live with disability, and all bring a highly engaging presence to their performance, drawing on differing skills and perspective.  The effect is rich. There are moments of surprise - Ryan Rowland's heavy metal guitar riffs punctuating the story of his birth, and Damien Turbin's Olympian lap of honour in celebration of the son that he is; moments of edgy intensity, like Duncan Luke's instinctive self defence against taunts; moments of stillness, through Ben Wishart's quiet penmanship and Richard Sami's soft movements; and moments of poignancy like Kym Mackenzie’s experience of loss.

The live performance is spliced by large-scale video footage of actors’ mothers talking about their son.  This multimedia approach to the relationship is highly effective, with each actor appearing entirely unfazed by a 4 m high video image of his mother talking about his birth.

Each story in this performance has its own character, as unique as the relationship that every son has with his mother, and yet the stories work together to tell a collective tale, culminating in a final scene that tingles.

I felt grateful for the opportunity to experience these glimpses into the lives of these sons and their mothers.  It reminded me that a parent is often the fiercest campaigner for a person, there for the long haul, and whose commitment, whose stand, reflects the essence of parenthood. 

It also reminded me how boys grow into men, into a sense of their own identity.  In telling their stories, each paying homage to his mother, the actors also convey something strong about themselves and their voice in this world.
 

With performances through to 11 March 2012, you should go see this excellent production if you are a mother, or if you've ever had a mother.

WIN TICKETS

Purple Orange has three pairs of Sons and Mothers double passes* to give away. Email us at admin@juliafarr.org.au with your contact details.  Names go into a hat and we'll draw three winners at 4.30pm Friday 2 March (Adelaide time).  Read the conditions below.

*Prize is for the entrance fee only. for two persons.  Any other costs, including travel, are not part of the prize, and are therefore the prizewinners' responsibility.  By participating in this competition, you accept that JFA Purple Orange bears no liability for any other costs associated with use of the tickets, or for any costs associated with cancellation or postponement of performance, or for any other consequence arising from your use of the tickets.


Copyright Julia Farr Association Inc 2012; Adelaide, South Australia.

Santa, where's my ride?

Take part in our taxi survey - the link is at the end of this posting.

Folk tuning in to the South Australia media in the last few weeks will be aware of coverage on accessible taxis.  Once again stories emerged about people having to wait an age before their cab shows up, with Christmas again the number one hotspot where people have to join a waiting list to see if they can get to Christmas dinner with family and friends.

in response, South Australia Transport Services Minister Chloe Fox's office said there would be a few more accessible taxis available this Christmas compared to last, and that any one left on a waiting list will get their ride by ‘doubling up’, presumably with someone going roughly in the same direction.

This was followed up by an announcement that all available accessible taxis would be on duty on Christmas Day, together with accessible buses on all routes (though it wasn't clear from the announcement if this means every bus on every route will be accessible, or whether at least one bus on each route, at some point during the day, would be accessible), and four minibuses.

This is a helpful response to the concerns people have about Christmas Day this year, and I have little doubt that those in Government directly concerned with this issue will attempt, with every good intention, to reduce the risk of people having to miss out on Christmas festivities because there isn’t a spare access taxi.  However, these earnest efforts will not resolve matters properly, because the Christmas Day pressure is not the problem, merely the most extreme symptom of the problem.

The problem is straightforward - the taxi fleet in Adelaide is not accessible.  If it was, we wouldn’t have this issue on Christmas Day nor at other peak times (and there are peak times every business/school day).  There are over 1000 taxis licensed in the Adelaide metropolitan area.  Of these, 97 are licensed access taxis.  That’s less than 10%.  

The effect of this problem is simple.  Whereas a non-disabled passenger can use any one of the taxis in the fleet, including the access taxis, a person with mobility support needs cannot.  One can use 100%, the other can only use 10%.

If a flock of interstate visitors were stuck at Adelaide Airport all Christmas Day due to a lack of taxis there would be outrage at such slack treatment.  I imagine there would be a review, and measures taken.

Why should it be any different for people living with disability?

This unequal treatment of people is unacceptable.  Coincidentally I blogged on this a year ago (click here to read) and very little has changed.  The United Nations Convention on the Rights of Disabled Persons has Accessibility as one of its six core principles.  Accordingly, the Convention goes on to assert that parties (this includes Australia and by association its states and territories) undertake:

b) To take all appropriate measures, including legislation, to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities;

The current taxi arrangements in Adelaide (and, I assume, South Australia generally) are discriminatory.  Through ratifying the UN Convention our government has signed up to do something about it.  The periodic limited release of additional access taxi licenses will not resolve the underlying discrimination and therefore is not an adequate measure.  Nor is the suggestion that people ‘double-up’.  

If a city the size of London can achieve a fully accessible taxi fleet, then Adelaide, indeed any town or city in Australia, has absolutely no excuse.

Purple Orange has placed a survey online (you can click here to go to it) for people to give feedback on their experiences with taxis.  Please take the time to give us your feedback.  If the current system is fine and dandy, tell us that and we’ll pipe down.  But if it’s not, please share your story so that we can amplify the issues and seek a government commitment to a genuine solution.

Justice and Safeguards

This week has seen two stories emerge in the South Australia media relating to disability and justice.

One was about murder charges laid against a couple who are alleged to have intentionally neglected to death their adult daughter living with disability. The second story was about the dismissal of criminal charges against a bus driver accused of sexually assaulting two child passengers living with intellectual disability.

Both stories provoke concern about the safety of people living with disability, and invite the assertion 'something must be done', for example that the justice system be improved so that people living with disability get a fair go, or that police-checking be strengthened, or that mandatory reporting arrangements be introduced or improved, or that security cameras be introduced, or that there be stronger arrangements for professional intervention to reduce risk of 'within-family' assault or neglect.

While all such ideas are understandable, by themselves they will not have the critical impact that people might hope for. This is because we have to think beyond the strengthening of justice remedies, security arrangements and professional interventions.

We have to think about the underlying expectations that appear to drive how community sees its role in the lives of people living with disability. Who in this young woman's neighbourhood was asking about her wellbeing? This isn't a question merely about the availability and practice of professionals, or the involvement of official 'community visitors'. it is a question about a person's visibility in community life, and about neighbourly concern.

Our society has a longstanding history of providing disability support in a way that separates people from ordinary community life. In so doing, we inadvertently train the citizenry to believe that the welfare of people living with significant disability is someone else's concern, someone else's job. Yet we are all part of a species that has ancient traditions of hospitality and care, at least in part because of the interdependency we all experience; that's why we organise ourselves into communities in the first place.

And therein lies the irony. In the way we have organised formal responses to people's situations, we have diminished our instinctive capacity to be welcoming and hospitable.

We have to find ways to support our communities to reconnect with this instinctive capacity, otherwise these deeply troubling incidents will continue, regardless of the hoped-for attainment of well-tuned justice systems and professional nirvana.

One clear path we can take is to discontinue our unfortunate habit of spending public money on special, separate arrangements for people living with disability, be it a disability enterprise sheltered workshop, a special bus, a group home, or a special school.

In the context of our ancient traditions, these well-intentioned facilities seem to me artificial and, when you stop to think about it, odd.   And they do little to uphold and advance the inherent value of people living with disability as active, integrated members of community. They are ultimately counter-productive.

Rather, we need to orchestrate disability support in ways that connect people into community life, not separate them from it.  It may well be that for some people living with severe disability this will be a difficult endeavour, but it is an essential endeavour to achieve better natural safeguards in people's lives and to improve their life chances.

In addition, we need to hold properly accountable all the arenas of community life - schools, workplaces, public transportation, malls, and so on - for being authentically welcoming and engaging of all citizens.

It will take a concerted effort from all of us. We cannot solely rely on the introduction of the proposed National Disability Insurance Scheme, because by itself that scheme may not be successful in retraining community to exercise its ancient and instinctive capacity.  Also, the scheme may not successfully address a problem that many people living with disability and their families have, where as a result of their experiences of service recipiency, or service-waiting, they carry very low expectations of what may be possible in their lives.

Instead, it will be each of our personal and individual actions of welcome, assistance, solidarity and creativity - person by person, street by street, and neighbourhood by neighbourhood - that will deliver the true safeguards in people's lives.