Vale - Suzanne Carman

I've been away from work these past few weeks and will be away for a little longer so this blog has been quiet.  However I am moved to write something today to honour the memory of Suzanne Carman, who passed away on 30 December.

Coming away from Suzanne's funeral today, I suspect I was the person at the funeral service who knew Suzanne the least.  Our connections were limited to the several meetings we had together, with Suzanne in her role as Executive Director of the South Australian state government's Office of Disability and Client Services (ODACS).

As a result of these connections the Suzanne Carman that I knew was the public servant who was in charge of disability policy and procurement.  I assessed Suzanne's ODACS contributions through my own world view, without investing sufficiently to know more about Suzanne's history and motivations.

It is indeed a very dangerous thing to make assumptions about people based on limited information, for today I learned so much more about Suzanne's life.

For example, I didn't know Suzanne was from Cairns.  I didn't know that she had a fine musical ear and talent.  I didn't know about her faith.  I didn't know that as a young adult she had deferred her studies to give service to the community.  I didn't know about the remarkable range of public service roles she had undertaken in her career, clearly driven by the desire to make a contribution.  I didn't know she had become a grandmother.

I only wish I had discovered these things while Suzanne was alive.

From the celebrant's words at the service today, it is clear to me that Suzanne wanted to leave a message of love and acceptance.  For me, these values lie at the heart of social inclusion and in advocating for better lives for people with greater vulnerability.   

But what I also think I have learned, or re-learned, today is that the same values need to apply in all such dealings, with those whom we seek to influence and with those who have different histories and perspectives. 

Thank you, Suzanne, and I wish I had taken the time to get to know you better.

Rest well.

Australia's Apart-hood

This week in South Australia the media has reported the difficulties that many South Australians living with disability encounter when trying to book an accessible taxi, especially at peak times such as Christmas.  The debate has now extended to include problems of finding enough accessible car parking.

At JFA we support the concerns that have been raised in the media by people living with disability, whose experience has all the hallmarks of apartheid, however unintended.  When apartheid was in place in South Africa, many people and governments around the world condemned it and contributed to the forces for change. This was because specific members of the community – black people - were not being given the same opportunities as other citizens. Why should we not react the same way to the current experiences of Australians living with disability?

Our view is that there should be a determined, systematic effort to ensure that all taxis are accessible, because everyone benefits from universal access.    Of course,this goes way beyond taxis and other public transport like buses.  It applies to every community building and open space that is there for the public.  It is not as hard as people might think to make our communities accessible  It starts with each of us being determined to see it happen.

For your interest, here follows an updated version of the article I wrote in the April 2009 edition of national disability magazine Link.

Australia's Aparthood (revisited)

I have cherished the ideal of a democratic and free society in which all persons live together in harmony and with equal opportunities. It is an ideal which I hope to live for and to achieve.

Hard to dispute, these words were spoken 48 years ago by Nelson Mandela responding to charges of treason and sabotage on the first day of his trial in South Africa.  Mandela was clear that he would not tolerate white domination, any more than he would tolerate black domination.  In pursuit of his ideal, Nelson Mandela spent the next 27 years in prison - truly an exercise in patience and determination.  

In the four years after his release in 1990, apartheid was dismantled.  These historic moments heralded the end of the blatant discrimination led by the South African government against black people.  The world breathed a sigh of relief as apartheid was finally vanquished.

As it is commonly understood, apartheid was a system of racial segregation that was enforced by the South African government shortly after the end of the second world war until the mid-1990s.  It is no accident that the word apartheid contains the word ‘apart’.  It is a Dutch/Afrikaans word meaning separation.  Translated literally into English, it means ‘apart-hood’.   

Much of the world outside South Africa recognised this for what it was: outrageous, unjustified discrimination and separation of people based on a particular characteristic (their skin colour). Its long overdue demise was universally celebrated. But is apartheid – aparthood –actually consigned to history?  

Consider the experience of people living with disability in Australia. Depending on the degree of a person’s support needs, he or she might have little choice other than to live in certain places, such as group homes with other people also living with disability.  Many children and young people living with disability may be directed towards a different, separate education, rather than having the genuine option of attending their local neighbourhood school.  People living with disability are under-represented in the Australian workplace, and many work in separate, ‘sheltered’ workplaces where the majority of their workmates are also people living with disability.  

In Australia, it is harder for people with disability to use public transport.  For example, in South Australia, there are well over a thousand taxis but less than 100 of these are accessible to people using wheelchairs. I can imagine the uproar if South Australia set aside a small number of ‘special’ taxis for women, or for black people, and they weren’t able to access the others.

Often people using wheelchairs are treated differently, and often shabbily, when they want to travel on buses, trains and planes. Many community venues are inaccessible to people living with disability, which denies them the chance to participate in recreation, education and other opportunities.  People living with disability have to use separate restrooms – if they’re lucky enough to find one that is actually accessible. 

We need to recognise that these arrangements have a lot in common with the practice of apartheid in South Africa.  Here in Australia, there is a group of people who, because of a particular characteristic (disability), are directed to special arrangements that tend to separate them from the rest of society, in housing, education, work, transport; and recreation. . As a matter of course, however well-intentioned, people living with disability have been set apart from the rest of the community. Aparthood is apartheid.

For many people living with disability, this enforced separateness is a prison where the bars are created by the negative attitudes of others and by inaccessible communities, and where each day's activities are about as meaningful as a prisoner breaking rocks. 

Aparthood was unacceptable, abominable and inhuman in South Africa. Why should it be regarded any less so here?  

At the moment, the Australian Government is putting the finishing touches to a national disability strategy, and its Productivity Commission is considering the future of disability support arrangements, as is the South Australia Social Inclusion Board.  . It is up to all of us to do what we can to ensure that the completed strategies genuinely address the underlying wrongness of our current disability support arrangements, rather than trying to patch-fix the existing system.

 

Key to this is the insistence that people living with disability enjoy equal access of opportunity, free from discrimination. It is the right thing to do. As a community we need to take action collectively.  Otherwise, like Nelson Mandela after his conviction in 1964, the Australian disability community will be breaking rocks in prison for a very long time.

imagine getting real

In a recent blog posting I talked about the problematic nature of congregate supports.  Among other comments, I received one from a parent, Ronni, who said this:

“Yes Robbi you are missing something. You have not asked those dedicated parents who provide the day to day care for the severely disabled. As much as we love our children we will wear out eventually and like you we deserve a holiday occasionally. Congregate living is an economic reality and does not have to be a bad thing per se ala http://www.camphill.ie/What-is-Camphill-p-6.html.
You harp on about what the rest of us would choose. Well my son is not like you or I. He is a very sociable being and will never be able to use technology to communicate - he needs 24/7 care and face to face interaction. I cannot provide this for the rest of his life and nor should I be expected to. Time to leave cloud cuckoo land. If you want a taste of reality you are welcome to come stay at my place for a month. You would learn the full meaning of compromise because your life would certainly change!”

I am very grateful to Ronni for taking the time to comment, and I’ve placed the comment into this new blog posting because I wanted to make sure people didn’t miss it - Ronni’s comment raises important points and made me stop and think.  In essence, Ronni’s challenge to me is to get real.

I am not a parent of a disabled child so I do not have the experience that Ronni and other parents have.  What I can understand is that many parents provide extensive and unremitting day-to-day support for their disabled son or daughter, and that over time this can lead to parents wanting to consider other ways that their family member can be supported.  

I talk a lot about personalised, individualised, socially inclusive options, and I much prefer these to congregate options.  This is because I have seen many services in many countries over the years, and the better services have typically involved people being supported in highly personalised ways within community (and not necessarily with a high price tag on the support). 

I realise that such options are not always available in every location.  Meanwhile, parents will want to choose the best option available for their son or daughter.  Ronni directs me to a website about the Camphill communities.  I have had past involvement with Camphill communities, and to a lesser extent L’Arche, and I recall an ambience characterised by a welcoming, family atmosphere and a culture of acceptance and contribution.  

Interestingly, the Camphill movement emerged at a time, in the late 1930s, when large scale congregate services were the main service option for vulnerable people who could not be supported at home.  By contrast, Camphill’s message was about the innate potential of people and how this might be nurtured.  The message is about the inherent worth of each person as a unique being.

What such endeavours appear to have in common is a deep respect for people living with disability, a commitment to live by family/community/spiritual values and a desire to support people to reach their potential.  I can see how such services will appear attractive and practical.  If I was a parent of a child living with disability and I needed another way for my son/daughter to be supported, I would want the best option available; if it were true there were no individualised options available or conceivable, then I can imagine I might seek more information about a setting like a Camphill community.

Unfortunately, because of the general history of service provision, augmented by the habits of government funding in many jurisdictions, most congregate services do not adequately reflect each person’s uniqueness, and instead people are installed into pre-ordained service programs and settings.  I have spent many years working with, or with the consequences of, congregate services.  From these experiences, I believe the best, most personalised, congregate services are still not as good as the best, most personalised, community-based services I’ve seen. 

I am also convinced, from my own experiences and from what has been reported, that vulnerable people (including people living with severe disability, people living with enduring mental illness, and frail older people) are at the greatest risk of neglect and abuse when they are placed in settings that render them separate from, and invisible to, the wider community.

Our work at JFA has been about trying to find, or imagine, better supports for people living with disability than those currently available.  As part of this work, I have been involved in, or otherwise seen, arrangements where a person living with severe disability is being well-supported without having to use congregated settings.  Such opportunities are not yet available in all locations but we can hope that one day soon they will be, so that there is authentic choice.   What is true is that there are plenty of examples available of how a person living with severe disability can be well-supported in highly individualised ways, so the only things that are stopping any jurisdiction, any community, from creating such choices is a lack of imagination and a lack of determination.

In the meantime, I can understand any parent being sceptical about the possibility of such arrangements, given the current reality of daily life.   Therefore, I think one of the issues for us as a community is that many people living with disability, and many parents, and many professionals, may not be aware of some of the promising and progressive advances that have been demonstrated in individualised supports.  Further, it seems to me vitally important that family members do have good information about such possibilities before making a decision about future support arrangements for a dependent loved-one.

At JFA we hope to illuminate more of these helpful advances.  Building on the well-received workshops we hosted in 2010, we are currently planning a number of events for 2011 that will provide greater visibility for some of these developments, and hopefully will provide useful material to people living with disability, the family members involved in their lives, and professionals.  

The reason we do this is because we want to help ensure that people and families are supported to get information about the progress here and elsewhere and how it shows what might be possible in people’s lives.  Otherwise, many people may find themselves making big decisions in the absence of such information.  It falls to all of us to do what we can to make sure that people living with disability, and the families involved in their lives, are assisted to assess, and access, the best possible options for support.

An increasing number of families are writing books about their discovery of such options and the resulting positive impact in the life of their family member.  For anyone interested, we have some titles available for loan from our office.  And if you have been inspired by someone’s book about what has been possible in their own life or that of a loved one, then let us know and if we don't have that title we’ll track down copies for people to loan.

In conclusion, I do not set out to dispute the role of families who are in the lives of dependent family members living with disability, or to criticise the decisions they might make about the support arrangements for their loved one, or indeed the choices that a person living with disaiblity might make for herself or himself.  Instead I hope that I can make my contribution to ensuring that people have better information about what might be possible, and where such options authentically safeguard that person's value as a human being, and uphold and advance the person's uniqueness and potential.

Entertainment Value

TheSuperheroes

While overseas recently I got the chance to watch a couple of bands at a gig in Glasgow.  First up were TheSuperheroes, whose members include both disabled and non-disabled people.  All band members played instruments, and these guys rocked.  They are still building their songlist, so their set was frustratingly brief but very impressive.

TheSuperheroes

They were followed by Mixit, an ensemble of singers who bill themselves as the world’s first inclusive pop group.  Mixit has developed a more extensive set of songs, backed up by some well-choreographed dance moves.

Both acts were highly entertaining, and reflected a good measure of accomplishment for all involved.

The troubling part for me was that this gig was played to an audience largely comprising people living with disability and their supporters.   

As such, it felt like another exercise in separateness and invisibility.  That said, all I had was a single glimpse into the lives of these two acts - one gig in one venue.  

Mixit

So, mindful that I haven’t seen their performances elsewhere, here’s how I hope things are.  I hope that Mixit and TheSuperheroes each have a band manager who is seeking out gigs for them at mainstream venues, in front of mainstream audiences, supporting (or being supported by) mainstream acts.   

  

I hope that both acts build a loyal mainstream following as a result of their musicianship rather than out of any sense of charity.  I hope that each band member has an authentic valued role to play in the band’s overall performance, so that each person’s participation does not come across as tokenistic or ‘pretend’. 

Mixit

Mixit have cut a DVD, I watched it for the first time today, and I really enjoyed it, for a number of reasons.  First, the production values are good.  By this I mean that the DVD looks and feels very professional, providing a documentary-style insight into the lives and songs of authentic performers.  Second, the personality of the band members really comes across in the DVD, and the way the DVD has been editied accentuates the valued role of each band member.  Third, there has been thoughtful attention to the band’s overall look (check out their stage gear) and to the choreography.  Fourth, these guys have certainly got out and about, because part of their material was shot in France. Finally, I enjoyed the DVD becuase it is highly entertaining, which after all is the point of DVDs.

I should mention as an aside here that in the DVD, one of the band members notes how he has been able to use some of his Individualised Funding to provide him with personal support while he is on tour.  How cool that is.

I encourage you to go visit Mixit’s website at http://www.mixitmusic.co.uk/ and you can hear TheSuperheroes perform the really quite impressive track Milky Way at http://www.myspace.com/thesuperheroesband

Imagine if, Imagine how, Imagine when

Mindful that a number of the over 2,500 readers of this blog will have previously reflected on the issue of group living, I think it important to regularly reflect on its problematic nature. So stay with me on this, and do post your comments if I’m missing something here.

The problem with congregated support is that the very nature of it makes it much harder to achieve authentic choice for people, and much harder to engage in community life in natural ways. No matter how a support agency might try to dress it up as a service model steeped in choice and inclusion (and having run several support agencies in different countries where congregate support was a feature of at least some of our services, I have done my fair share of such self-deception) the fact is that when a bunch of people are required to live together there are inevitable compromises.  Sometimes in life, such compromise is freely entered into.  For example, many of us might have experienced shared living (and therefore a commitment to compromise) at various points in our lives, be it with family, with co-students, with flatmates, with partners.  However, we do not typically make longer term decisions to live with people we didn’t know previously or without a deeper mutual commitment to share our lives.  

If such imposed compromise of shared living weren’t enough, group homes have an extra constraint – the staffing arrangements.  Most of us don’t have a procession of people coming through our daily lives who are paid to be there, and for whom our homes represent their workplaces.  And most of us don’t have our daily choices shaped (and curtailed) by the relative availability of paid support staff, which is the inevitable consequence when there are less staff than people being supported.  The fact that the paid support staff have to share their efforts across a number of people means that some choices cannot be entertained because  a staff person cannot be in more than one place at a time.

Why on earth might we think that such arrangements are acceptable?  After all, for those of us who don’t live in such constricted arrangements, we are unlikely to nominate such arrangements as our first choice should our circumstances change.  Why do we persist in making congregate support the main way by which we support vulnerable people?   

One answer, the easiest answer to come up with, is money, or rather the lack of it.  Issues of recurrent funding for support is an oft-cited reason given by jurisdictions for placing vulnerable people in shared living arrangements, be it a group home, nursing home, or other ‘supported residential facility’.  In my 25 years working alongside vulnerable people, I can’t ever recall a meeting between government and support agencies where the issue of funding didn’t come up. When we focus primarily on the issue of funding, we are making a fundamental mistake.  Funding is not the main barrier lying between vulnerable people and a good life.  A much larger issue that is stopping us from assisting vulnerable people into lives of choice and citizenhood is a lack of imagination.  When presented with the challenge of supporting vulnerable people into rich lives, and with funding that seems modest, our typical solution is to group people together.  This is profoundly unimaginative, so much so that it works against the values of choice and inclusion that most support agencies are meant to be subscribing to, and which characterise the personal standards that most of us set in our own lives.  

If we authentically subscribe to the values of choice and inclusion, then funding levels need present no barrier.  I have recently visited with agencies, in both urban and rural areas, who are accomplishing highly effective individualised supports, without congregate living, and without congregate doing, and without rich seams of public funding.  

Among other things, what such agencies have in common is an unshakeable commitment to choice and inclusion, the capacity to imagine how this might be achieved despite the dramas of public funding, and the gumption to take action now. 

I believe that there are many support agencies who have a sincere desire to be helpful in the lives of vulnerable people, and will happily subscribe to the values of choice and inclusion.  Yet those same agencies often report they are constrained in their efforts by what the public funder is prepared to pay for. In which case, I strongly encourage those agencies to take a deeper look at the meaning of choice and inclusion, and how these can be achieved in ways that are uncomplicated by group responses.

I am very happy to talk more with any support agency interested in exploring now they might become more imaginative in supporting vulnerable people into rich lives of choice and citizenhood.

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.