Paper given at the NSW ASSID Conference at the University of Wollongong
5-6/7/2002 by Michael Bleasdale and John Tomlinson.
A number of programs have been developed by governments and welfare agencies which aim to supply services, prepare people for employment or study, create networks of support, and which claim to integrate people with disabilities into the community. There is a growing recognition by government departments of the need to fund individuals rather than services directly, in order to ‘better target’ individual needs. This brokerage funding has the potential to deliver more appropriate support but has yet to translate itself into the provision of services which enhance clients’ power to determine what is happening in their lives. Further, the concentration upon service delivery has led those responsible for the implementation of disability services legislation to take their eye off the broad goal of community inclusion.
So far, the incorporation into the community which has been achieved has been disappointing. Writers such as Morrell (1998) have provided important insights into why people with disabilities should be wary of such incorporation and should question closely the basis on which people with disabilities are offered inclusion. We propose that carefully designed community work programs which are directed by self advocacy agencies and by people with disabilities have the capacity to build community support structures which people with disabilities might find acceptable.
Clearly, there needs to be a substantial restructuring of financial arrangements available to people with disabilities, self advocacy groups, and systemic advocacy agencies before such community work programs could develop the independence necessary to work effectively.
The policy of community integration of people with disabilities began in earnest with the proclamation and implementation of the Commonwealth Disability Services Act 1986. This was followed by the complimentary legislation by states after the Commonwealth State Disability Agreement of 1992 which placed responsibility for a large number of services with the states. The rights-based credentials of these Acts are not in question, however the effectiveness of seeking broad citizenship rights within the constraints of formal, specialist service provision is questionable, and will be a theme to which we return later in the paper.
Over the last four decades governments of all political persuasions at both Federal and State or Territory levels have moved from institutional to decarcerated disability service delivery. Governments have invariably claimed the best of intentions as the underlying basis for such a policy shift –denying that decarcerated service delivery was preferred because it was cheaper. They have not denied that they hope to save money but invariably claim that ‘the savings’ will be directed back into disability services. Governments have chosen to term their decarcerated service delivery model ‘community based disability programs’.
This approach was grafted onto the predominant service delivery rhetoric of the time. This rhetoric grew out of theoretical approaches to ‘treatment’ including the Least Restrictive Environment/Alternative (Bachrach 1985), Normalisation (Nirje 1985), and Social Role Valorisation (Wolfensberger 1983). The Australian idea of ‘Community Living’ was based on these ideologies and principles of application.
The movement away from institutional care within large congregate care facilities, into smaller housing units located in the so-called ‘community’ (together with the development of day options to accommodate those who would otherwise attend programs within the confines of the large facility) weakened the degree of support people with disabilities, their families and advocates could garner for a move toward greater human rights for people with disabilities. Rapley and Ridgeway (1998) have argued that the rights-based aims of the Community Living movement were co-opted by governments which recognised large total institutions were politically unpopular. They also saw Community Living as a mechanism used by governments to pursue economic fundamentalist goals. In 1977 Andrew Scull in his groundbreaking text Decarceration warned that the real motivation of most governments engaged in deinstitutionalisation processes was to save money and was highly likely to end in the decarcerated receiving fewer services. If anyone has doubts about the accuracy of Scull’s prediction in present day Australia they should read the April 21 transcripts of Background Briefing (2002).
Since the mid 1980s governments in Australia have increasingly adopted an economic fundamentalist mind set (Pusey 1991, Edwards 2001). In welfare services this ideology has manifested itself as ‘fiscal rectitude’ which in turn translates itself as cutbacks in service provision and tightened eligibility for benefits and services. The Howard Government has become obsessed with the idea that recipients of welfare programs have ‘to give something back in return’ (Hammer 2002, Schooneveldt 2002). Post McClure (2000) such ‘mutual obligations’ are being extended to include people with disabilities. The ‘mutual obligation’ strategy has been criticised elsewhere ( Goodin 2001, Castles 2001, Tomlinson 2001). It is clear that ‘mutual obligation’ does not address four fundamental problems experienced by people with disabilities. For decades, people with disabilities have campaigned to end:
This paper will address strategies that we think are necessary to shift the focus back onto community, by directly advocating progressive community work, and arguing for the adoption of funding mechanisms for specialist disability services designed to enable self-determination amongst individuals and collectives of people with disabilities.
There continues to exist the quaint idea that if support is to be provided to people with disabilities who reside in the suburbs then in it should take the form of specialist provision, within staffed houses, special transport and so forth. This idea is backed up by the common notion that such specialist provisions are necessary in order to include people who are essentially ‘different’ from the supposed norm. Such notions are constantly challenged by members of the disability movement who claim that the existing service provisions are rendered (unfortunately) necessary by society’s failure to provide equally for its citizens, both ‘disabled’ and ‘non-disabled’. In addition, they assert it is the ‘barriers’ that society puts in place which actively prevent access to both the physical and the institutional landscape of the community (Barnes, Mercer and Shakespeare 1999). Reform needs to take place both at the level of the general community and within the specialist disability agencies if people with disabilities are to take their place in the community in a way that allows them to access their human rights.
The economic fundamentalist agenda, expressed through tightened eligibility requirements combined with the ‘mutual obligation’ strategy, is a clear signal that the present Federal Government is heading in the opposite direction to that which might enhance every citizen’s human, social and economic rights.
The tightening of eligibility invariably leads many people with significant disabilities unable to access services which (if provided) would assist them to become integrated into the community. They may also find they are without income support either because they don’t quite fit other income support mechanisms or because they get breached because they fail to meet some imposed ‘mutual obligation’. This further marginalises them. Too many people, living outside of institutional settings, experience community and government neglect at the very time they are told they are receiving community based programs.
We are entirely committed to the least restrictive community option whether that is in an institution or in a community setting. However, we don’t want people with disabilities, their agencies or the government conflating the concept of services provided to people living outside institutional settings with the idea that such programs amount to community incorporation. The propensity of governments to term decarceration programs ‘community based programs’ has led them either to believe their own rhetoric or simply to mystify the public. Very few agencies supplying services to people with disabilities are supplying community services. They are not engaged in progressive community work either with their clients or with the surrounding community. For the most part they are community agencies only in the geographical sense – the agency is situated in a suburb and their clients are housed in that locality.
What is missing is the:
Many members of the community with whom most clients of disability services interact are, at best, indifferent to the needs and desires of people with disabilities. Some community members are fearful of interactions and others are openly hostile. Just one example: four people with significant intellectual impairments were housed in shared accommodation. An issue which arose for the immediate neighbours was that ‘strange noises’ emanated from the household from time to time. The government disability agency discussed the issue with the neighbours on both sides and those at the back and the matter was resolved. However, a compassion impaired woman who lived across busy the four lane street complained to the Queensland Minister for Housing and he insisted that the four people with disabilities were moved despite opposition from the four people themselves and from the government disability agency. If the agency had been successful in instigating community programs then many members of the community would have ardently opposed such arbitrary ministerial actions. Neighbours would, if community incorporation was working, have ardently opposed the Minister’s disregard for human rights and his denial of natural justice to these four people with a disability.
This incident points to the level of ignorance about the nature of disability at the level of the community. Outmoded attitudes have not successfully been challenged and overturned. The resilience of such attitudes is, in part, due to the continuation of a ‘managed care’ approach to specialist support services coupled with an unwillingness on the part of successive governments to make available to people with disabilities the basic services that can be accessed by other members of the community (eg. legal aid, public transport, schools, employment, etc.). For years, people with disabilities have highlighted the fact that government departments routinely ignore these issues. French (1994) put it this way:
It should be appreciated that the situation of disabled people in ‘normal’ society is frequently highly abnormal due to prejudice, adverse stereotyping, and the difficulty of adapting to an environment designed for non-disabled living. For life ‘in the community’ to be successful, therefore, the wider social and economic environment, in terms of housing, employment, transport, education and leisure facilities, must change to accommodate disabled people (p.128).
Strategies to develop community networks that will facilitate inclusion have largely been left to inadequately funded service providers. Their limited impact must be understood within the context of the core activities of those providers. Our contention is that the goal of inclusion, whilst a right, needs to be facilitated by groups which have a different purpose to formal service providers.
We therefore propose models of community work that can be controlled by disability self advocacy groups. If the community is to become involved, specific community projects (which do not have a direct relation with specialist disability services) will need to be instigated to attract funding from sources, government or otherwise. Self advocacy groups must decide the direction and pace of any such change process.
Our advocacy of programs which could lead to people with disabilities being included in their communities is not starry-eyed, rather we insist that the reasons people are included and the manner in which they are incorporated into communities is of central importance.
As early as 1972, Paulo Freire (p.47), citing Simone de Beauvoir, noted “the interests of the oppressors lie in ‘changing the consciousness of the oppressed, not the situation which oppresses them’ for the more the oppressed can be led to adapt to that situation, the more easily they can be dominated.” Freire goes on to suggest that welfare recipients:
are treated as individual cases, as marginal (people) who deviate from the general configuration of a ‘good, organized, and just’ society. The oppressed are regarded as the pathology of the healthy society, which must therefore adjust these ‘incompetent and lazy’ folk to its own patterns by changing their mentality. These marginals need to be ‘integrated’, ‘incorporated’ into the healthy society that they have ‘forsaken’. The truth is, however, that the oppressed are not marginals, are not…living ‘outside’ society. They have always been inside – inside the structure which made them ‘beings for others’. The solution is not to ‘integrate’ them into the structure of oppression, but to transform that structure so that they can become ‘beings for themselves’(p 48).
But he warns that “Such transformation, of course, would undermine the oppressors’ purposes” (p.48).
Many writers representing the views of groups marginalised from mainstream society are wary of inclusion. The standard advice such writers give to people offered inclusion is that they should ask: on whose terms, and at what cost, but above all they are advised to remember that inclusion is much more than being made complicit in an indecent act. South Australian disability activist David Morell (1998) considers:
‘inclusion’ in the ‘community’ is not enough. Indeed the very concept does not make sense. The ‘community’ itself is so full of oppression, separation, exclusion, diverse interests and conflict for many of those who are already ‘included’ in it as to render the uncritical use of the concept positively misleading and pursuit of the goal of inclusion disempowering (p.17).
Both Morell and French would concur with Armstrong and Barton (1999) when they contend that, “Inclusion necessitates the removal of the material, ideological, political and economic barriers that legitimate and reproduce inequality and discrimination in the lives of disabled people” (p.214). Armstrong and Barton go on to suggest:
pity and concern are directed at some groups… only rarely are issues relating to social exclusion and discrimination presented as ones concerned with human rights. Instead, a ‘needs’ discourse is adopted, suggesting that difficulties … can be overcome by technical solutions … a ‘needs’ discourse is disempowering because it focuses attention away from the possibility of individuals, groups and communities taking responsibility for undertaking action themselves to bring about change (p. 215).
The intensity of the inclusion debate within disability circles is a symptom of the way English speaking societies regard ‘normality’. Employment and being ‘able bodied’ are widely regarded as closely linked. The central requirement for payment of unemployment benefits is that applicants have to establish they are ‘ready, able and willing to work’. The eligibility requirement for sickness benefits is that applicants have to establish they are temporarily incapacitated for work and for Disability Support Pensions that one is more or less permanently incapacitated for work. Whether seeking work or income support it is necessary to establish one’s capacity to carry out employment tasks. The system of production and society more generally is geared around ‘ability’ or ‘capacity’ to labour. Disability activists assert that this ‘ableist’ ideology plays an important part in centring society around the ‘normal’, ‘able bodied’ lifestyle which in turn relegates to the margins those experiencing impairments in functioning. In particular, Abberley (1999) contends that:
just because a main mechanism of our oppression is our exclusion from social production, we should be wary of drawing the conclusion that overcoming this oppression should involve our wholesale inclusion in it….
a society may be willing and in certain circumstance become eager to absorb a proportion of its impaired population into the workforce, yet this can have the effect of maintaining and perhaps intensifying its exclusion of the remainder. We need to develop a theory of oppression which avoids this bifurcation, through a notion of social integration that is not dependent upon impaired people’s inclusion (p.53).
One problem we have in many parts of Australia, including NSW, is that the rights of people with disabilities are articulated in the Disability Services legislation as a specialist service function. To date there has been little real evidence of success in this field, as monitoring and evaluation of service outcomes has focused more on organisational mechanisms such as policies and procedures, rather than any systematic measurement of increase in the participation and inclusion of people with disabilities in many different aspects of their community – let alone their enjoyment of rights.
As the discussion above suggests, disability activists believe that the enjoyment of rights will only come about when the social landscape is rendered more accessible at all levels – environmental, structural and attitudinal – through the ending of discriminatory practices and the enactment of radical social policy that overturn assumptions about the incapacity of people with disabilities. This does not mean that there is no role for the specialist disability system to play in facilitating inclusion and participation for people with disabilities who need and use such services. Clearly the existence of such goals within the NSW Disability Services Standards (Standard 5) would indicate that there is very definitely a role to be played.
There needs to be some serious scrutiny of the methods that may be employed to achieve such outcomes, given both the resource constraints under which services currently operate, and the inability to date of government departments to evaluate services according to their capacity to achieve individual outcomes. The review of the NSW Disability Services Act’s operation supported a move in this direction (NSW Law Reform Commission 1999, Bleasdale and Kayess 2001).
The inter-relationship between participation and inclusion and other key outcomes for people with disabilities, such as choice and decision-making, can only be facilitated by mechanisms that lie outside the control of service providers. For that reason we are advocating a radical shift in the delivery of formal support programs to people with disabilities. We wish to see a move from a system that provides block grants to disability agencies in return for their delivering a range of programs into which a person might ‘fit’; to one where funds are allocated to a person based on that individual’s assessed need. Agencies would have to deliver support according to what people wanted – or individuals would purchase the service elsewhere.
One of the advantages of utilising individualised funding is its capacity to purchase support services that lie outside the formal disability service system. Instead of having the government contract with a specialist disability service provider to deliver services, such as the provision of meals and domestic assistance, we would prefer that the person with disability had control of their funds thus enabling them to decide whether to use the disability agency’s services or to purchase a variety of meals and to hire a local domestic cleaner. This provides both choice and autonomy to the person within a system that is still fundamentally block-funded. In states, such as Western Australia and South Australia, the allocation of funds for services is based on the assessed needs of the individual. Issues which predominate are adequacy of levels of support and developing mechanisms to best allocate funds to services, so that they meet their obligations to the service user. We view this sort of individualised funding as a productive way to meet the self-determination demands of people with a disability, as well as facilitating a relationship (albeit commercial) between them and other members of the community.
Advocating such a change, at least in part, contradicts a position taken by the authors some years ago (Bleasdale, Crumpton, Hardaker and Tomlinson 1996), where the introduction of individualised funding, as a model of support for people with disabilities, was criticised for its inequity of resource allocation, and its capacity to splinter an already fractured disability movement by promoting self interest and individualism over the spirit of solidarity which is needed to further the struggle for basic human and civil rights.
Many of these concerns remain, especially where individualised funding is introduced as one support ‘model’ within a system that is still fundamentally block-funded. However, where the allocation of funds for services is based on the assessed needs of the individual, the argument as to inequity is not as valid. We view this type of individual funding paradigm as likely to result in a more productive way of meeting the self-determination demands of people with disabilities compared with large-scale lobbying for adequate ‘beds’ within a block-funded system.
Government fiscal stringency, eligibility tightening, economic fundamentalist mind set and ignorance about disability issues has invariably lead to people with impairments being excluded from programs which could assist them. Disability service and advocacy agencies may campaign for increased allocations but this is unlikely to sway government. Only when the broader community becomes sufficiently involved with those, who have a disability and who are excluded from service programs from which they would clearly benefit, will the political pressure on government be sufficient to force increased financial allocations to service agencies.
Lobbying by advocacy groups should shift from focussing solely on the amount of government funds provided to support specialist disability services and concentrate in some substantial degree upon the adequacy of such funding to provide satisfaction to the service user. The strategy of utilising the experience and expertise within systemic advocacy organisations to secure individualised funding projects, and then to run those projects, has been demonstrated in British Columbia and in the United Kingdom where lobbying resulted in the passing of legislation that enables people with disabilities to receive direct payments with which to purchase their required support.
Our 1996 argument, as to increasing or maintaining solidarity, was probably utopian in a service system attempting to satisfy individuals, whose specific needs varied greatly, unless the service agencies were totally committed to incorporating client and self advocacy groups perspectives at all levels of the agency from service delivery to management. We don’t rule out the possibility of this occurring but the experience so far would seem to indicate that it is a relatively rare phenomena. It now seems to us that the community might be an easier site at which to attempt to build solidarity amongst people who experience a range of disabilities. This would constitute a sound basis on which to move towards inclusion with the wider community.
The specialist service system will probably always have a significant role to play in developing specific support programs that aim to address the needs of people with disabilities. The discussion above advocates an approach to delivering such a system that simultaneously enables people with disabilities to exercise self-determination, and creates roles for community members to play within support networks developed by recipients of funds. However, the main focus must still be upon the development of a community that is capable of really welcoming and facilitating the access of people with disabilities. The prime feature of community life is interdependency. We all depend on others.
The most powerful political person in this country is surrounded by minders. We all rely on others: the butcher the baker and the candlestick maker. Part of the trade off we each pay for community membership is subjugation of some of our desires. Inclusion is important but we need to take Morrell’s (1998) advice and ask ‘on whose terms?’ The real community work issue for people with disability is not that they are:
It is that they need to rely on themselves and comrades to build the sort of community structures which might go some way towards amassing the force necessary to help build the sort of community in which they want to live.
The first step in developing a workable community integration program requires government at state and Federal levels to accept that their efforts to incorporate many people with disabilities into the community over the last decade and a half has been at best only a partial success. The next step is for disability agencies to come to a similar realisation. The reason they have not succeeded in gaining community acceptance is not hard to identify. The models of community work theory they have employed, the level of dedication, the amount of money committed to such projects and the ideologies which have underpinned their efforts are simply deficient.
We will deal with the last point first. What is required is the adoption of a liberationist ideology – part of which requires a commitment to confront some at least of the hegemonic forces which drive the construction of the State.
It is possible to be orientated towards a liberationist world view in a social vacuum. But in order to operationalise such a propensity it is necessary to ask “What is it which oppresses?” What are the social structures which sustain that oppression and what are the ideologies which legitimate those structures? Australia is structured by race, gender, class, age, locality and the manner in which we respond to people with disabilities. The ideologies which support that structure are racism, sexism, classism, ageism, urbanism and ableism. Each of the hegemonic forces which control this country are imbued with some or all of these ideologies. Those who internalise these ideologies are in turn alienated from their humanity.
Since Gramsci (1977) we have understood that our liberation is dependant upon the development of counter hegemonic forces if we wish to escape oppressive structures. The development of a counter hegemony is dependent on our understanding of the negative impact that the reinforcement of oppressive structures has on those around us and our commitment with those who are oppressed. The first part of this process is analytical, the second is emotional and the third is enhancing our capacity to act in solidarity.
These are the central feature of the process of developing a liberating community work form. The actual design shape of any liberating community process needs to contain a commitment to act in solidarity with those who are oppressed. The power to determine direction and pace must remain in the hands of those with whom we are acting in a spirit of solidarity.
In order to situate our proposed model of liberationist community work within a disability context we would want to incorporate the insights which the leading theorists of the social model of disability (Oliver 1996; Barnes et al. 1999; Morris 1991) have provided. We would want to incorporate Carol Thomas’ (1999) feminist insights of Oliver’s social model. We would want to overlay these insights with a rights approach such as is provided by Armstrong and Barton (1999) and would want to incorporate a class analysis similar to that enunciated by Gleeson (1999). In situations where people were working with Indigenous Australians with disabilities we would want the community work process to employ Indigenous workers, be controlled by the Indigenous community and to be informed by the wealth of progressive community work literature which exists in relation to involvement with the original owners of this country (Smeaton 1998, Day 1994, Tomlinson 1978).
There are a number of recent main stream community work texts (Peavey 2000, Kenny 1999) which might provide useful grounding in community work per se. But liberating community work with people with disabilities requires more than a simplistic adaptation of main stream texts. Whether one starts from Paulo Freire (1972) or from a more political critique of society; the central issue in liberating community work is not the creation of ideologues, academics, or technocrats. The issue is about solidarity with and on the terms laid down by those the community work process asserts it is there to assist. A liberating community work process, of necessity, will involve solidarity with individuals who experience disability and with their group self advocacy organisations.
Frightening though it may be, for many community workers, they will have to forego an increasing propensity to describe themselves as ‘empowerers’ and ‘social entrepreneurs’. Community workers who claim to empower others denigrate those they claim to be empowering (McArdle 1999 p.29). They intentionally or unintentionally distort the process in which they are engaged. Community worker can assist others to remove the obstacles to their taking power but they can not give people power. People have to take power for themselves. Those who want to describe themselves as ‘social entrepreneurs’ have so identified with the economic fundamentalist explanations of the world that they are part of the very problem which allows the Howard Government in the 2002/3 Budget to herald the fact that it intends to shift 180,000 disability support pensioners to an unemployment benefit paid at $52 a fortnight less than the pension. This is allegedly being done as a way of helping them back into employment.
People claiming to be working in the interests of people with a disability must build a counter hegemony to this sort of economic fundamentalist mindset if any sense of social and economic justice is be maintained in Australia. It is vital that people with disabilities, their neighbours, self advocacy and peak disability bodies become activists in the struggle to develop communities that facilitate social justice and the inclusion of people with disabilities. This will involve a number of strategies beyond the political lobbying and policy consultation that currently take up a good deal of agencies’ time. It will necessitate forging alliances with other groups in the community whilst leading specific projects to build mutuality within specific localities.
Liberating community work is about engaging with others in an act of solidarity in an attempt to end alienation, exploitation, neglect and oppression. It is about developing a critique of the existing structures of society and the manner in which those structures place obstacles in the way of all people developing their freedom, rights and capacity to act in order to enhance their liberty in ways which promote other’s civil rights.
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