UNDERSTANDING AND CHALLENGING
In the first five pages of this website we have talked about what we think the good things in life are and have shared lots of ideas on how they might be achieved. It can sound so simple, as though all we need to do is expect and dream of a good life for people with disabilities and it will happen. Experience tells us that this is not the case and in this page we will focus on trying to understand some of the more common blocks and barriers that get in the way.
This important topic can be difficult to address because even with the best of intentions we may accidentally be constructing a block or barrier to the good life for someone else. Many of the blocks and barriers have roots in our history and continue to shape our thinking, imagination and expectations today. Some are easier to recognise and then remove or compensate for than others. We need to work in a way that anticipates blocks and barriers and make plans to safeguard people and their lifestyles.
We cannot avoid the fact that we all live in a society that values competence, productivity, health and wealth and that people who don’t have these attributes can therefore be seen as less valuable by society generally. This includes many people who live with disability, who may be highly valued by the people who know and love them but still risk being devalued in the general community. In order to understand these ideas further we have included information from a framework known as Social Role Valorisation (SRV) that challenges us to reflect on social devaluation in depth and also offers strategies to assist with inclusion and belonging.
In this page we will…
LEARNING THE LESSONS OF THE PAST
How our history shapes our present and future
It is difficult to speak generally about history and past responses to people with disabilities without either romanticising or demonising these responses. There have been atrocities – both large and small -but there have also been good things that should not be forgotten.
We are all accustomed to how things change and how we need to adapt. For example, if we consider the rapid changes in technology during the 20th and 21st Century. The phones, fax machines and typewriters of past decade were once cutting edge innovations in the same way mobile phones and tablets are now. They were the best options available based on means, resources and information of the time – but as our options have progressed so has our preferences.
In a similar way, as our thinking on the best way to support people with disabilities has changed that does not have to imply a criticism on all that has gone before. Even Initiatives that were once seen as cutting edge will one day be improved on and surpassed. Change for its own sake is not necessarily a good thing and so it is important we carry forward any wisdom of the past whilst being open to challenge some of its less constructive legacies.
One of the barriers to people with disabilities taking up their rightful place in community today is that we carry with us unhelpful thinking from the past. If not understood and consciously discarded, this thinking can infiltrate any new response or initiative. Examples of this unhelpful thinking include:
- people with disability were better off with their own kind;
- they had nothing to contribute or were a menace;
- they would be a burden on their families and;
- it was better for parents to send them away and focus on the other family members.
As we move to new opportunities with the NDIS, we need to appreciate that these ideas are not far below the surface of current day thinking. People who don’t know the history, regularly come up with ideas of group homes, specialised nursing homes or respite centres – all of which were tried and found wanting decades ago.
The practice of segregating people to institutions served a few purposes. Many families, encouraged by experts, believed they were doing the best thing as they saw the community as a dangerous, unwelcoming place. This lead to the belief that the safest place for their vulnerable family member was in a special setting with expert care and people of their own kind. Institutions made the general community feel better because people who were different were out of sight. Unfortunately, research tells us that being behind closed doors is actually the least safe place and that being visible in community is far safer (Sobsey, 1994, Tomison & Wise 1999, French, Dardel and Price-Kelly, 2010).
We have to acknowledge that there were lives lost and lives wasted. People with disabilities have missed out; their families have missed out and communities have missed out because they were not present.
In the past, the absence of paid services or specialised responses meant needs were often met in ways that were deeply embedded in family and community. That is not to say that people with disability were living perfect lives, but roles and jobs were found for people and there was an expectation of contribution. The growth and development of human services in recent decades has confused and compromised that human response. A well-meaning service system has promised a life that it can never deliver. The individual’s autonomy has been eroded and reduced and it is not uncommon to now see people and their families, waiting for funding or waiting for an expert to tell them what they can or can’t do with their lives. It is important we also understand this history and the risk to both autonomy and freely given relationships in a person’s life when paid support is introduced.
Grassroots Democracy Campaign for Disability Rights
Museum of Australian Democracy at Eureka
The disability rights campaign has a decades long story. The same time that moratorium marches hit the streets of Australia to protest against Vietnam, so too was another grassroots movement making their voices heard.
Deinstitutionalisation of Australians with disabilities was a result of many, often unrecognised, people who wanted a better way of living, and control over their lives.
It’s time to fix the power dynamics that allowed the abuse of people with disability
A Senate report released details the stark reality of violence and abuse of people with disabilities across Australia. The report shows the root cause of violence, neglect and abuse of people with disability begins with the devaluing of their lives. It points to the effects of this devaluing in all spheres including legal, justice, regulatory, policy and services… Until we end the assumptions that people with disability are deficient and dependent, the power differentials that underpin disability violence and abuse will remain.
SHUT OUT: The Experience of People with Disabilities and their Families in Australia
Department of Social Services
Many of the large institutions that housed generations of people with disabilities— out of sight and out of mind—are now closed. Australians with disabilities are now largely free to live in the community. Once shut in, many people with disabilities now find themselves shut out. People with disabilities may be present in our community, but too few are actually part of it.
Excerpts from Telling the Untold
First published in 2001, Telling the Untold shares insights from the Focus on Families Project CRU rang in 1996 with the closing the Challinor Centre which was a large disability institution in Ipswich Queensland. As this institution was being closed, CRU undertook this project to support families of the men and women who were residents of Challinor Centre.
Here we share some excerpts from Telling the Untold which reflect many of the common experiences that were shared.
Part 3: Learning From the Project
In this, the final chapter, the authors reflect on what was learnt from this project and the impact that institutional life had on the residents of Challinor and their families.
In this final section some of the significant insights that were gained through the work with families are identified. CRU believes that these insights have the potential to assist policy makers, health professionals, service practitioners, and families to advance a mutual understanding of the potent relationship that might exist between service systems and families.
How our beliefs influence our actions, expectations and values
How we think, imagine, perceive and what we expect – our mindsets – act as a major influence in achieving beliefs of what is possible for people who are marginalised or vulnerable. Our mindsets are critical to shaping our attitudes, assumptions and expectations. Mindsets can be positive or negative or a complex blend of both, but if they are not examined and updated then we fall back to what we think we know from the past.
Without a holistic framework and sound thinking, we face a number of risks:
- We risk focusing on the things immediately in front of us and neglecting other things that may be even more important. For example, if we focus only on funding and paid service then we could compromise the critically important things in life that money can’t buy.
- We also risk assuming that people with disabilities and families know exactly what they need and that they too don’t need to unlearn old ways and be supported to think in a new way about what is possible.
- We need to recognise the risk that there will be changes that are more in the interest of parties other than the person with a disability.
- We need ways to understand the difference between what something is called and what it actually is or we risk following fads and changes that don’t last.
Changing mindsets is a difficult thing to do but the extent to which old ones are let go and new mindsets are embraced will determine our effectiveness in change. As we seek to move from the ‘why’ to the ‘how’ we need to be able to understand how we change our thinking; our frameworks; our focus and priorities.
Mindsets are a particular mental framework of attitudes, beliefs, assumptions and expectations. They determine our thoughts and reactions to many situations we find ourselves in.
Mindsets are especially prevalent in politics. For example, politicians who talk about “asylum seekers” have a different mindset to others who talk about “illegal immigrants”. These fundamentally different mindsets lead to fundamentally different policies about how to handle contentious issues surrounding unauthorized immigrants.
Mindsets: The Sticks and Stones that break more than bones
Margaret Cooper and Dianne Temby
Names can hurt, they can wound deeply. Indeed we would contend that in many instances people are battered and bruised by stick and stones that pass themselves off as names. Naming is significant. Naming can be to include or exclude certain people or groups of things and at times formalised into labelling.
It can also influence peoples reactions to individuals or groups. Naming and labelling give us ways of knowing and can reflect part of a broader world view. Margaret and I have been named by our families only once but labelled by others many times.
How a father sees life for his daughter
One of the things I want to emphasize – if nothing else – is that people have dreams. We need to have families reclaim the dream that for so many years they were told was lost or couldn’t exist. “Your child will never…” “Your child will never…” And after a while, families stop having dreams. That is probably the most disabling thing that disability is all about.
The Social Model of Disability
People with Disability Australia
The social model sees ‘disability’ is the result of the interaction between people living with impairments and an environment filled with physical, attitudinal, communication and social barriers. It therefore carries the implication that the physical, attitudinal, communication and social environment must change to enable people living with impairments to participate in society on an equal basis with others.
BEING SEEN AS DIFFERENT
Prioritising ‘disability needs’ over ordinary human needs
Another barrier is that we perceive people with disabilities as being so different to other people that we think first about their additional or disability specific needs rather than their human needs. It may seem reasonable to say let’s focus on these needs and then they will be ready to go to the local playgroups, school, sports club, dance or scout group etc. Unfortunately, the common experience is that that time never comes.
If we think that people need to be fixed before they can belong, then that can become a never-ending story. It seems that the disability needs are endless and the right time to focus on the ordinary human needs is continually delayed. When people start on the special and segregated path they are more likely to stay on it and over time and for that path to take them further away from the path that their peers and siblings are on.
When we focus on difference rather than sameness, we put aside what we know to be true about what makes life good for all children for example living with their family, playing with other kids, having fun and instead offer something very different to a child who has a disability. By contrast, focusing primarily on the typical and developmental needs equips people with other essential building blocks for life such as relationships, skills for connecting, a sense of belonging and resilience.
This perception of difference manifests in many ways. Usually we expect less of and for people with disabilities but sometimes ironically we expect those who may have less capacity to cope with more. We put the spotlight on people and we set the bar higher about what they need to achieve before they earn the right to participate. It is also common for people with disabilities and other vulnerable people, to be treated and spoken about in ways that other citizens would not be. Invasion of privacy, lack of respect, being treated as eternal children and being spoken about as though they are not there are all indicators that we see people as so different that we trample over them in a way that other citizens wouldn’t tolerate.
Having people with disabilities visibly take their place in their communities as people who give, learn, lead and love helps to challenge the biases and limited assumptions of us all and helps us to raise our expectations of what is possible for people. So, as we bring the good life to life for one person, we are in fact raising expectations, challenging thinking and playing a part in a movement for systemic change that makes our communities richer for everyone.
Following the Natural Paths of Childhood
…the segregated path is very tempting. However a moment’s reflection raises some important questions: What have been the life outcomes for those who have gone through the segregated system? Has it been an ordinary life?
If we segregate children with disabilities for the whole of the developmental period, give them a low powered curriculum of ‘life skills’, surround them with models of others with low skills and often difficult behaviour from a life of rejection is that going to lead to inclusion, good social skills etc.? Such questions may lead us to think of looking to stay on the top line as an alternative more likely to lead to the ordinary life. Clear evidence is emerging that this leads to higher social skills, higher likelihood of employment and independence, and more community inclusion in later life.
Whether you’re a family member, therapist, teacher, service provider, or have some other role, how are your actions impacting the life of a child or adult with disability? Will his memories consist of exclusion or inclusion? Feeling valued for his strengths or devalued (and “worked on”) because of his perceived “deficits”? Living a wonderful, ordinary life or being shuffled from one set of services to another? Keep thinking…
Views from Within: A Reflection on Institutionalisation
I have spent fifteen years of my youth in a variety of institutional settings and the last fifteen years of my adult life living within my community. These experiences leave me very clear about what constitutes a real life. I want my life to be rich with experiences. Being isolated, congregated and segregated did not afford me ordinary experiences like being loved, making a meaningful contribution to my community, working and seeing different places; I missed out on many things that help a person grow.
From Paternalism to Dignity: Respecting the Rights of Persons with Disabilities
Shantha Rau Barriga (Human Rights Watch)
Good intentions do not always make for good policy. That is particularly true for people with disabilities, who are often stripped of the most fundamental of human rights—the right to make choices about their own lives—under the guise of “protecting” them from the challenges of decision-making and living independently.
Whose needs are being met?
Simply because of the nature of their impairment, many people who live with disability rely on others for assistance. How they get this assistance varies and whether the supporter is paid or unpaid, family, friend or service provider there will be competing interests. It is in negotiating this assistance that there exists the potential for another large barrier – ensuring their needs remain the number one priority.
The complexity of juggling competing interests in freely given, personal and family relationships is common to all families, as the finite resources of time; energy and money are shared around. It is more complex in these arrangements when family members needs remain greater over time and when parents, siblings or partners are supporting a family member with disability long after what is typical in the general community. Recognising this potential conflict of interest, some families intentionally invite other friends or extended family into the dynamics to safeguard the needs and wants of the person with disability. People also take up funded support which introduces another set of interests.
People who receive support from the human service system can find to their surprise that despite what is said, their needs do not appear to be the highest priority. This has probably always been the case, but as the service sector has grown and developed, and as it has become embedded deeper into the lives of more people, the issues are magnified and the bureaucratisation increased. The complexity this has created has become a significant barrier to people getting access to the good things in life.
Of course, all human services are answerable to funders, tax payers, legislators, auditors, and members to name a few. The key point here is how these competing needs are prioritised as this has serious implications for what supports are offered and the way in which they are provided. If we compare human service organisations based in the same jurisdiction, subject to identical funding and legislation, and yet serving people differently one can see that there is a level of choice to the priorities set by organisations.
Becoming Powerless in the Client Role
From the perspective of the model of technocratic managerialism, as applied to human services, the problem or need is defined as being the efficient and economical management of services. Possible remedies then include standardisation, uniformity, and cost containment. The focus is on the management of the service rather than on the content and quality of the service; human beings become subordinated to processes.
When it comes to the provision of support, if boundaries are blurred and services encroach on the private domains of life, people in turn come to expect that services and government will provide all their needs and wait for that to happen. People are educated into this disempowering thinking process. When we stop to think about this, few of us would actually want government to take over all areas of our life. Without due care, the priorities of a complex system can easily eclipse the needs of an individual the system is there to assist.
As the NDIS begins in Australia there is potential for more funding for more people. It is important to reflect on what aspects of life belong in the personal domain, and should therefore be met and resourced by the person themselves, their family and friends and what aspects of life we could expect some additional formal support for. Differentiating and articulating these needs helps people to then plan the best way to meet them and to look at who and what resources will be required over time.
A Matter of Life and Death
The hunger strike was a desperate but clear expression of Belinda’s dissatisfaction with her own life. Not eating was the only mechanism that she had for making known her deep dissatisfaction, and it took only two days for me to really start looking at what her message was… This event, and the six weeks prior to it, reinforced my awe of my daughter’s will, and her strong drive to determine her own life. She had even been prepared to die for it.
Some Broad Strategies To Shield People From Invasive Bureaucracy
[these strategies] hold out the hope that we might one day get much better at what it takes to have bureaucracy that is subordinate to, and enabling of, human well-being. Hence, the problem ought not to be construed as being the existence of bureaucracies, as these are both a necessary evil and an aid to our lives, rather, the question is the kind of bureaucracies that we allow to flourish. We most certainly need a different vision of the kind of bureaucracy that is the most compatible with service to people.
How Rules push away Friends
Global policies are developed when the administration does not know the people involved or does not properly supervise or train the staff. When this happens, broad agency control enters into everyone’s life whether it is personally needed or not. Massive decisions are made, no longer based on personal need, but on agency policy.
THE RISK OF A LIFE WITHOUT RISK
Ensuring Safeguards help, not hinder, the good life
We live in a society where our appetite for risk in the general community also seems to be much less than in previous decades. We hear the term ‘helicopter parent’ used to refer to overly anxious parents who don’t let their children out of their sight. We hear about an increased tendency to litigation and the need for people in all sorts of professions to ‘cover their backs’.
It can seem counter intuitive to set vulnerable people up to take risks. The more typical response is to want to wrap up our most vulnerable loved ones in cotton wool to protect them. However experience is showing us that equipping people to learn about life and other people and to embed them in community will give them greater resilience and make them safer. This doesn’t mean abandoning people to community and expecting they will be looked after and treated well, rather intentionally setting them up to succeed and surrounding them with safeguards for when arrangements inevitably go awry.
If risk is not managed well, it can become a significant barrier to people with disabilities getting access to the good things in life. Even though research indicates that people are less safe in segregated settings, people with disabilities are still regularly segregated in the name of risk – whether that is risk to themselves or because they are seen as a risk to others.
The concept of the ‘Dignity of Risk’, describes the importance of people being able to take risks without compromising safety and with adequate protection from harm, abuse and exploitation. In recent years as the community and the service systems have become more risk averse, the dignity of many people with disabilities has been compromised.
Intentional Safeguarding involves anticipating that things could go wrong and having some strategies in place to minimise harm. Safeguarding can start in small ways. Ordinary things like knowing how to use a mobile phone or having some money for a taxi fare can form the basis of safeguarding. Another safeguard is being known and valued in your neighbourhood. Being missed when you are not around or don’t turn up at something and having people look out for you are important to our sense of belonging but they also offer potent safeguarding strategies – they keep us safe. Many people find that having multiple safeguards in place helps people to then take risks with dignity.
False Realism And The Unexplored Potential In People’s Lives
“True realism” as opposed to “false realism” comes about whenever we both give in to hope, and look beyond the moment to the promise of what life might yet offer. It in no way requires us to wear rose-coloured glasses or to ignore the many hardships and difficulties of life. It simply asks that we not become so preoccupied with the barriers in life that we no longer dream. When we resign ourselves to “reality”, we forfeit the chance to taste the benefits of other unconsidered realities, any of which may be just as practical as any reality we rely on today.
Without vigilance, safeguards themselves can become impediments and can have the unintended consequence of hindering rather than helping people to get the good things in life. Some safeguards that have been put in place to improve the quality of services can become barriers. An example of this is risk policies or rules that are designed to protect and safeguard people can end up being the thing that stops them doing ordinary things like having a job, spending time on their own or travelling independently. Some accreditation systems, intended to produce quality services can increase the focus on risk and in fact distract time and resources from assisting people to build a good life in community.
Risk is an ordinary part of life and is something we all learn to manage and accommodate. To deny this to people with disability can be a major barrier to them having access to the good things in life.
Stop Worrying About Risk
There is a need to be brave and work with commissioners and regulators to create a culture that trusts in the ability of natural human relationships and conversations to come up with better, more life enhancing solutions to human worries than mechanistic risk assessment processes ever will. It is time to stop talking about risk and to start talking about good lives and the natural worries that are part and parcel of them.
Does A Quality System Keep People Safe?
Quality systems can contribute to an overall strategy of safeguarding people with disability, as long as such systems are not seen as the be-all and end-all of safeguards for people with disability. Instead there must be meaningful, active and supportive engagement of people with disability and their allies in this system, and strong legislation which protects their rights, including the right to choose, and to change services when things don’t work out.
Positive risk-taking: an idea whose time has come
Steve Morgan, Psychiatrist
Positive risk-taking is weighing up the potential benefits and harms of exercising one choice of action over another. This means identifying the potential risks involved, and developing plans and actions that reflect the positive potentials and stated priorities of the service user. It involves using available resources and support to achieve desired outcomes, and to minimise potential harmful outcomes.
Positive risk-taking is not negligent ignorance of the potential risks. Nobody, especially users or providers of a specific service or activity, will benefit from allowing risks to play out their course through to disaster. So, in practice it is usually a carefully thought-out strategy for managing a specific situation or set of circumstances.
Whose Risk is it Anyway?
Although keeping people away from risk might seem like we are protecting people, my own view is that no system can reduce risk altogether. Ultimately we make people safer by connecting them to a wide range of other people, by making sure they are visible and present in local communities, and by building confidence and self-esteem. As a by-product, this might also help people feel more confident doing things that are not otherwise considered ‘risky’ when others (e.g. people not using social care) do them
Learning the Lessons of History in the Pursuit of Quality
…we know that the idea and pursuit of quality will not bear rich fruit in the lives of people reliant on human services when it is held captive by unjust social policies or slick, risk-aversive people processing. Until quality is freed from these traps and allowed to operate as a guide to excellence, we… could find ourselves completing wonderful paper work while failing to investigate the ‘true mental and physical state’ of those with whom we work – and thus, failing to learn the lessons of history.
SOCIAL ROLE VALORISATION
A framework for Belonging and Contribution
Throughout this page we hope you will have found a number of ways to understand and appreciate the common blocks and barriers that can get in the way for people with disability as they strive for a typical life in community. In this section we will share an introduction to the Social Role Valorisation (SRV) framework. We believe this powerful framework identifies, challenges and helps to counter these blocks and barriers through strategies that offer a positive way forward. Social theory like this can be used to inform our assumptions, beliefs, intentions and direction.
The development of SRV theory was led by Dr Wolf Wolfensberger in North America in the early 1980s. It built on earlier work by him and others on the principle of normalisation. We believe that this thinking has stood the test of time and continues to be relevant as a means to stay firmly focused on the needs of people with disability, rather than being distracted by the many competing needs in modern service delivery. If used well, SRV has the potential to be a robust thinking framework for informing the way we serve people.
Some of the Universal “Good Things of Life” Which the Implementation of Social Role Valorization Can be Expected to Make More Accessible to Devalued People
Wolf Wolfensberger, Susan Thomas, and Guy Caruso
It seems self-evident that people who fill valued roles in society are vastly more likely to attain the things that society values (or to have others accord these to them) than people who do not fill valued roles. However, we are, of course, speaking only in probabilistic terms… Therefore, while SRV does indeed have dimensions that are culturally relative… we can still say that people who fill roles that are valued in whatever society at whatever time are apt to have access to many good things… and are likely to be valued in any culture.
SRV as a resource for seeking and shaping the Good Life
SRV theory is not a panacea, nor was it ever said to be. Life will be a challenge whether one has disability or not. However, if one is poorly advised on what it takes to make a good life, then it is possible to miss many of the real opportunities that exist to do this. So, the best way to see the role of SRV is as a body of advice about how people with disability can obtain fulfilling lives and address their diverse and unique potentials as human beings. In this, SRV theory has much to offer, as can be seen in the results it can lead to if employed properly. In this way, SRV theory is wise counsel.
The need for roles & relationships
An SRV framework uses strategies that are not only consistent with what is typical and valued in our society, but it also encourages us to go-the-extra-mile in our willingness to support someone to gain valued roles and to maintain those roles. The teachings of SRV also confront us with a consciousness about how people with disabilities have a heightened vulnerability to wounding experiences at the hands of society, and even at the hands of human services or good-hearted people.
SRV, Change and Good Lives
In the absence of a decent conceptual framework, people rely on habit and history… Importantly, SRV is a social theory and not values-based training. In other words, it provides us with a framework of thinking rather than a set of rules. Whether or not we care to apply SRV or even elements of SRV are values-driven decisions. Of course having values that decry prejudice and a passion for all people having equality and decent lives makes for a fertile ground for SRV.
Module: Social Role Valorization
Social Role Valorization theory began as a way to figure out how to support people on the margins to participate in socially valued activities. The idea is that when people hold valued roles, they are more likely to receive the opportunities that will help them to achieve ‘the good life’ that goes along with those roles. The theory also recognizes that many of the experiences of exclusion (referred to as ‘wounds’) result in behaviours that are frequently perceived as ‘symptoms’ of developmental disability.