Tuesday, November 30, 2010

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.

Tuesday, November 23, 2010

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
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.