Intellectual disability and political action

Michael Bleasdale and John Tomlinson
ASSID Conference Brisbane Convention Centre 23-26/1997


Ever since people with an intellectual disability have been confined in lunatic asylums there have been those who would speak for them. This article canvasses the struggle between those who advocate on behalf of others and self advocacy. we argue that people with an intellectual disability need to take control of the debate    surrounding their future. Developing a specialised agenda in relation to people with an intellectual disability, if it does not emphasise generalised human rights within a context of political action, runs the danger of being marginalised.  Many current advocacy practices and some disability ideologies confine their efforts to ‘specialist’ disability issues, and because they set out to exclude people with an intellectual disability from the debate, limit the possibility of meaningful change.  In our discussion of intellectual disability advocacy we have drawn on examples of indigenous and other progressive advocacy  movements.

Introduction – agenda setting

Local small-scale meetings which have become common modes of inclusion for people with intellectual disabilities are meant to facilitate their having a say in the running of the services that have been established to assist them.  Such meetings  have resulted from the Commonwealth Disability Services Act requirement that agencies enable the participation of people with disabilities in the decision making processes of the organisation. These meetings provide an opportunity for people with an intellectual disability to hone their political skills.

However, placing issues specific to people with disabilities on the mainstream agenda has proved difficult. The question then becomes, “how to  influence the main political agenda in such a way that issues are discussed according to the wishes of those with a disability?” This question strikes hard at the central issues of power and control, with executive government wielding substantial control over both resources and those groups on which they bestow funding.  Governments are able to manipulate the media when it comes to agenda setting.  A good example of this ability is the current debate on the GST.  The GST lost the Coalition the election in 1993.  Under the guise of tax reform, the Coalition has restored the GST to its agenda.   The Coalition has succeeded in having the mainstream media suggest that a GST is demanded by a wide cross section of the people.

In Australia the main effort to date, with regard to intellectual disability, has focused almost exclusively upon influencing a narrow ‘specialist’ agenda.  Gaining significant change involves influencing both the ‘specialist’ disability agenda and the mainstream community agenda.   Focusing only on the specialist agenda tends to marginalise disability issues, and does not consolidate the place of important issues, such as institutionalisation and human rights abuses, on the mainstream agenda. Some of the more isolationist elements of the disability advocacy sector avoid linking human rights and disability issues. Two strategies are necessary to incorporate disability issues within the mainstream agenda.  The first, through a more ‘inclusive’ role for the advocacy sector in influencing mainstream issues, together with a more sophisticated understanding of the political process.  The second, most importantly, through the encouragement of people with intellectual disabilities themselves to participate in the activism that is needed to deliver meaningful change within our society, so that they can exercise their rights as Australian citizens.

The disability sector in Australia

Currently there is a lack of a cohesive political agenda for people with intellectual disability, with concrete aims and targets, together with strategies to meet these goals.  This is symptomatic of the rifts, divisions and general disarray of the disability movement in Australia.  Newell has characterised this movement as:

… fragmented, predominantly organised around disease labels and seems to have lost ground, compared with the self-help initiatives fostered around the time of the International Year of Disabled Persons in 1981 (Newell, 1996, 429).

This is even more obviously the case within the intellectual disability movement, where the voices of people with intellectual disability in relation to their own needs have been strangely silenced.  At the political level the ‘voices’ of people with intellectual disability are drowned out by vocal advocates who do not have intellectual disability.  Whilst the issue of service abuses get raised frequently by these advocates, the usefulness of a strategy that effectively silences those people who are most likely to make an impact on the mainstream agenda is counter productive.

Usually when people decide to get involved at a policy level it is because they either want to  change the way a policy impacts on them and their friends or because they want to resist change.  Take for example the pledge by the previous Labor Government in Queensland to close the Basil Stafford Centre.  Many people welcomed this closure because of the multitude of abuses carried out there on inmates by staff.  Others opposed closing it because they feared their children would not manage in the community.  In 1995 the Queensland Labor Government signalled that it would allocate considerable funding to ensure that this deinstitutionalisation process would not degenerate into community neglect as has often occurred both in Queensland (Chenoweth 1996) and in other parts of Australia.   In 1997 the Queensland National/Liberal Government decided that Basil Stafford will remain open.  This Government alleges that Basil Stafford will ‘over time be converted to a respite centre’.  Many people had become involved in the policy process and in the end those who wanted to keep the Centre open won.

In this description, so far, we have alluded to a division of views in the community about the closure; pointed to party political differences in approach and signalled that the language of the policy process often hides more than it reveals. The really important questions in a policy process dealing  with people with an intellectual disability are:

  • What role did people with an intellectual disability have in determining the outcome?
  • Did self advocacy organisations contribute to setting the agenda ?
  • Was the debate run by professionals and other advocates who spoke for those with an intellectual disability?
  • Did they consult with those who lived in Basil Stafford before they decided their position?
  • Did they frequently reconfirm strategies and tactics with the people who lived there?
  • Or did they just treat them as inmates  on whose behalf they were acting?

The seminal questions in relation to setting the agenda are who owns the debate – who controls the direction of the debate: the people who will be most directly affected by the outcomes, or the powerful advocates?

Disability legislation – enabler or straightjacket?

Deinstitutionalisation is often sold as a liberating process by governments intent on cutting costs and where this occurs it can lead to neglect of the needs of people ‘released’ from incarceration.   The move toward de-institutionalisation in general has hit hard times recently, and, even more importantly, the service options within the community which were meant to replace the need to institutionalise people have not been forthcoming.  In 1988 Tomlinson, echoing Scull’s warning a decade earlier (Scull 1977), wrote:

…more and more people will be pushed out of institutions, only to find that they have to fend for themselves in boarding houses and other less than suitable accommodation.  It would be a very hollow victory to have achieved de-institutionalisation on this basis (Tomlinson 1988, 8).

Written at a time of great optimism, during the warm glow of the enactment of the Commonwealth Disability Services Act 1986 (DSA), these comments serve as a warning to those who believe that the locus of all disability activism must be upon the abuses perpetrated within the confines of large congregate care settings, or institutions.  Those who guard the purity of their advocacy, by refusing to help in the planning and administration of new, community-based services, have contributed to the realisation of the above prediction.  Their blinkered adoption of what they term ‘social advocacy’ underpinned by Social Role Valorization (SRV) ‘theory’ (Wolfensberger 1992) has fuelled the politician’s rhetoric that ‘the community will provide’ for people with intellectual disability.  As Mr. Justice Einfeld (1997) noted, the community in its present state cannot provide adequately for people with special needs. Many were placed in an institutional setting precisely because the community could not or would not provide for their care.  There needs to be significant adjustment in the community before accessibility at all levels for people with intellectual disabilities will become a reality.  This is not about a society consciously ‘devaluing’ people with intellectual disabilities.  Rather it is about recognising the current attacks on the ‘Welfare State’ have resulted in a community in which disadvantage and inequality are increasing.  Working through with the surrounding community the adjustment required of them in order to facilitate the inclusion of people with disabilities into their community is not devaluing.  It can enhance the prospects of successful inclusion in community life, thus improving the quality of life of people with disabilities.

The major tool for reform in disability services in Australia has been the Disability Services Act 1986, which was replicated in states throughout Australia when responsibility for delivering a large number of disability services was devolved back to the states as a result of the Commonwealth State Disability Agreement 1992.  While this legislation has provided a more thorough framework for the funding, monitoring and improvement of disability services, it has not had the same degree of impact on realising the rights of people with disabilities.  When the Australian Law Reform Commission (1996) reviewed the Commonwealth legislation it commented:

In the Commission’s view the Act does not provide a legal framework that advances Australia’s efforts to discharge its international human rights commitments.  The Act fails to focus on people with a disability themselves and their needs and rights.  It focuses instead on funding services which provide disability support (p. 46).

The major effort of the disability movement centres around disability services, either lobbying for the closure of institutions, lobbying for more funds for community based services, or challenging service transition plans which do not meet the standards intended by the DSA. The disability service sector is inadequately equipped or resourced to safeguard people’s human rights. A point emphasised by the Australian Law Reform Commission (1996):

The present Australian position, far from recognising the rights of people with a disability, is largely the result of the presumption, apparent in the legislation, that government and service providers know what is in the best interests of people with a disability and necessarily will act accordingly (p. 55)

‘Social’ advocacy organisations assume to know what is best for people with disabilities when they  actively seek to avoid issues of self-determination for people with disability.  This is evidenced by the submissions, made by two advocacy groups linked to the SRV/Wolfensberger mode of puristic advocacy, to the MGM Consultants report, entitled “Advancing Advocacy: Disability Advocacy Effectiveness Project” (MGM Consultants 1995).  According to the 1996 Australian Law Reform Commission Report Making Rights Count, while some advocacy groups were certain that their role strongly involved assisting people with disabilities in the exercise of their rights,

[O]thers were quite adamant that it was not a function of advocacy services to provide information, or to assist people to become confident and assertive enough to speak out for themselves (p. 215, emphasis added).

We would have expected that by focusing on disability services, the Disability Services Act should have already addressed the problems that lay within the disability services sector by now.  However, because the rights stated in the principles of the Act are related totally to service delivery, they are immediately consigned to the specialist disability ‘basket’, and the issue of institutions becomes a ‘service option’ issue to be dealt with by one sector under the aegis of one ministerial portfolio.  Attempts to reduce institutional care become a battle for resources/wages within a particular sector.  By confining the debate within the service sector of the human service industry a perfect opportunity to run the human rights debate in the wider community has been missed.  The disability sector could emulate those indigenous leaders who have brought their communities’ issues out into the public arena, and attempted to make Australian governments account for their record in relation to United Nations Human Rights  conventions and treaties signed and ratified by Australia.

Eleven years after the enactment of the Disability Services Act, we should be campaigning for widespread societal adjustment,  aimed at ensuring all services in our communities can be accessed by all members of society.  The benefits that would accrue to people with disabilities through the proposed ‘special adjustments’ would also benefit other people.

The aim, then, is to influence the main agenda while maintaining those items on the ‘specialist’ disability agenda which are particularly rights based.  The obvious vehicle for achieving this is a reinvigorated self-determining disability movement. Such a proposition  would be opposed by the so called ‘social’ advocacy movement which  is discussed in the next section.

Problems with ‘antisocial’ advocacy in Australia

According to the definition adopted by the Disabled People’s International:

DISABILITY: is the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers (DPI 1982).

Advocacy is about addressing the social barriers that face people with disabilities  (Banks and Kayess 1996, 194).  If we assume the barriers to be almost exclusively attitudinal, then advocacy will tend to be very antagonistic toward society as a whole, aiming to change attitudes on a very wide scale.  However, if we assume that society cannot be taken as a whole, and that other groups experience similar disadvantage, we can identify more accurate and targeted goals.  This latter strategy also is ‘inclusionist’, but only when local level advocacy is informed by human rights principles.

The arguments in this section provide a direct rebuff to elements of the ‘social’ advocacy movement who wish to promote their model above other styles of advocacy.  Some ‘social’ advocates go to the extreme of refusing to allow the term ‘advocacy’ to be applied to efforts which they deem to be not identical to the rigid principles that they have applied to their own form of advocacy.  We refer specifically to the model of advocacy espoused by Wolf Wolfensberger (Wolfensberger and Zauha 1973), and which is rabidly adhered to by some within the ‘social’ advocacy movement in this country. Despite the emphasis of advocacy being upon the societal barriers that oppress and disadvantage people with disabilities, the Wolfensberger model of advocacy in fact, albeit unwittingly, reinforces the medical, “personal tragedy” model of disability (Oliver 1996,  Attrill-Wheeler and Cassinides  1994):

Wolfensberger’s focus on protection of the vulnerable and their externally-determined ‘best interests’ along with notions of wounding, continue the medical model’s characterisation of disability as personal or individual (Banks and Kayess 1996, 196).

The adoption of the stance of never working toward the goal of empowering people with intellectual disabilities to speak on their own behalf is the problem.  In the eyes of the general public, the person with intellectual disability remains in the shadows, perpetually unable to communicate for themselves, and thus unable to readily experience the same freedoms and responsibilities as ‘other’ members of society.

The Wolfensberger model of advocacy is flawed to the extent it focuses upon its moral ‘purity’, and its fanatical devotion to eradicating conflicts of interest.  There may be circumstances in which a worker or a friend speaks for another.  Clients of a service may feel intimidated by staff of the service or a client of a service may feel that to criticise the quality of the service will lead to withdrawal of all services provided by an agency.  A person may feel that an agency will not take seriously his or her complaint.   In such a situation the advocate might stand along side the client and support that person.  Support is just that, it does not entitle the advocate to speak for the other. Unless another explicitly requests you to speak for them and there are substantial reasons why the person does not want to or is unable to speak on his or her own behalf then the would be advocate should remain silent.  To advocate ‘on behalf’ of another devalues that other; in that the advocate either assumes the other is incapable of self advocacy or that the advocate is indifferent to the other’s capacity to advocate successfully on his or her own behalf. Nicholas Von Hoffman, an Alinsky organiser, expressed it this way when he said a profession “that does others duties and assumes others’ rights is not a profession but  a paid ruling class.” (cited in Tomlinson 1982,  71).

The basic assertion of the advocate is that the other on whose behalf the advocacy is allegedly taking place is ‘in need’ of assistance:

Three disabling effects grow from professionalised assumptions of need.  First is the translation of need into a deficiency….Professional practice consistently defines a need as an unfortunate absence or emptiness in another…. The second disabling characteristic of professionalised definitions of need is the professional practice of placing the perceived  deficiency in the client…. The third disabling effect ….results from specialization….justifying economic growth through the service sector. (McKnight 1977, 78-81. [italics in original]).

Therefore having a ‘professional’ doing others’ duties undermines the social value accorded to the other ‘on whose behalf’ the advocacy took place.   It is an example in John McKnight’s (1977) terms of the need of the servicing system or of the individual ‘professional’s’ need which  is being satisfied.  At best whenever it occurs it amounts to imperialism of another’s self.   At worst is pompous ‘professionalised’ self aggrandisement.  McKnight suggests:

Modern heretics are those professional practitioners who support citizen competence and convert their profession into an understandable trade under the comprehensible command of citizens. (p.86).

Confounding McKnight’s prescription for good professional practice is the behaviour of many of the Wolfensberger addictees who not only advocate on behalf of others but arrogantly assert that their particular form of advocacy is the only acceptable form of advocacy.  An anathema of such Wolfensberger addictees is self advocacy, particularly when it takes a group format.  It is as if they  presume that people with an intellectual disability are incapable (deficiency thesis) of articulating their humanity, desires, and plans for a more liberated life.  Such a presumption intentionally ignores the reality of the union movement, decolonial movements, the women’s liberation movement, and, in our country, the ongoing indigenous struggle.  Each of these movements adopted a group format and are prime examples of self advocacy.   It would seem such addictees are conveniently oblivious of history.  One bizarre example of the assault on self advocacy is provided by Cocks and Duffy (1993):

Advocacy means acting on behalf of another person. This element of the definition draws into question the concept of self advocacy.  If one acts on one’s own behalf, a more accurate term might be “self help” or “self determination” or some similar term. (p. 57 italics in original)

This attempt to undermine the self advocacy movement by denying that individuals can and should advocate on their own behalf can probably be explained by the Wolfensberger mystification applied by Cox and Duffy (1993) earlier in their definition.  They assert  that “Advocacy involves minimising conflicts of interest.”  (p.57), thereby refusing to admit the structural reality of having anyone advocate on your behalf involves your relinquishing power to another.  Conflicts of interest can be recognised, ignored, lied about and glossed over but they cannot be removed.

We argue that it is essential to acknowledge that all advocacy on the part of another involves a conflict of interest and that is why we insist that support rather than advocacy should be the approach adopted whenever possible.  We cite the example of Australians for Native Title as an example of support rather than advocacy in relation to indigenous Australians.   But it is also an example of self advocacy by over 41,000 non-racist Australians who are speaking in their own interests about their desire to live in a country which respects the property rights of the indigenous owners of this land.  Those non-racist Australians who have signed the petitions are also saying to the Howard / Fisher Governent ‘You don’t speak for me as you set out to implement your ten point Wik plan’.

Therefore, we suggest that self advocacy is really the purest form of advocacy, despite the semantically rational argument of Cocks and Duffy. The standard of advocacy should be judged by how well it enables the person with intellectual disability to articulate directly his or her claims or demands.  What currently passes as ‘social’ advocacy should be at best regarded as a type of service, and no freer from conflicts of interest than other disability services.

The right to self determination

The right of an individual with an intellectual disability to make choices, indeed to be central to and control the decision-making processes that occur in his or her life, is part of what is known as ‘self-determination’.  Despite being a service objective for people with intellectual disability in many countries, and in Australia being enshrined in the Disability Services Acts, the level of self-determination is still significantly lower for people with intellectual disabilities as compared with other members of the community (Wehmeyer and Metzler 1995, 117).  In Australia, this is partly due to the difficulty of pursuing rights through a service-regulatory law, because self-determination implies control of as well as participation in decision-making.  The ability to accommodate self-determination is no more evident in ‘anti-social’ advocacy than it is in many disability services.  While many systemic advocacy groups are run by people with disabilities, a large number of organisations ‘representing’ people with intellectual disabilities have little or only token involvement of their constituent members. Some ‘social advocates’ have demonstrated so little concern for self-determination that they have been prepared to take over self-advocacy groups, originally run by people with disabilities.  These organisations have been captured by people without disabilities, who have proceeded to turn them into so-called ‘independent’ or ‘social’ advocacy organisations. Two example of such actions are: the takeover of Speak Up For Yourself (SUFY) in Queensland, and the conversion of Self Advocacy for Intellectual Disadvantaged People in South Australia to Independent Advocacy, a group run along  Wolfensberger lines.

Self-determination is a crucial element of successful self advocacy, on both individual and systemic levels, especially when it focuses on one’s rights as a member of society, and not just as a service user.  To be self-determining in society is to participate and become ‘included’. This fact was not lost on Bengt Nirje, who wrote in the 1972 Normalization book, usually totally attributed to Wolfensberger:

In society, one common and accepted way to assert oneself and the endeavors one feels identified with is through cooperation within social bodies of common interests and goals, such as political parties, labor unions, tea-totaler (sic) clubs, social and recreational organizations, …. [the] enhancement of the voice of the most voiceless of all would point the way to the strengthening of the voice of other devalued and impaired groups (Nirje 1972, 177-178).

Striving for self-determination plays an important part in the assertion of one’s human rights and has proved to be achievable when developed within the self-advocacy movement:

As members of self-advocacy groups become more informed about how power structures in society limit their access to resources and power, they become better able to understand that it is this system that is inadequate.  Such a realization is potentially quite meaningful to individuals with developmental disabilities.  This realization can be a strong antidote for feeling blamed for having a disability by a society that neither provides equal opportunities nor meets their needs (Miller and Keys 1996, 314).

The self-advocacy movement in Australia has been used as a means by which to increase the self-esteem of people with intellectual disabilities, and to educate service providers on the rights of people with intellectual disabilities.  However, Miller and Keys stress its capacity to genuinely contribute to the activism process:

Beyond the emphasis in empowerment theory on individual strengths and capabilities, stress is also on awareness of the strength of group action, collaboration, and partnership.  Such collective action is the most effective way members of the self-advocacy movement can end the long history of discrimination against individuals with developmental disabilities (Miller and Keys 1996, 317).

If people experiencing an intellectual disability are to take command of the direction of the debate some things must happen:

  • it is they, rather than those who would speak for them, who must make the demands;  those who would stand along side people with an intellectual disability will need to curb their predilection to speak for others;
  • advocates, support worker, parents and friends need to learn the skills of enabling (empowering) others (Renouf and Klause 1992);
  • supporters will have to learn that being mute is not necessarily a sign of indifference;
  • just as Quakers use their presence to bare moral witness as a weapon to confront repression, the provision of moral support of people with intellectual disabilities can be more demanding than being a mouthpiece.

This does not absolve a supporter from providing advice, assistance, interpretations of policy or of other’s actions and when requested additional skills.  It demands that supporters become partisans in the struggle to improve the quality of life of people with disabilities and that they work to develop a solidarity.  As in any liberation struggle you cannot make others free, you can only remove obstacles to others’ freedom, they must take that freedom for themselves.

The role of advocates and supporters without disabilities, then, in the struggle for human rights for people with intellectual disabilities, must be about supporting, assisting, offering education, and creating the conditions for empowerment.  This point is reinforced by the English writer, Simon Aspis ( 1997) when he says:

self-advocacy can not be a liberating experience if its process and contents are managed and controlled by the same people  who have power to oppress those who have been labled as having learning difficulties (p. 653).

How to set the agenda – self-determination again

Because few people have a capacity to go very far beyond that which they have experienced, part of developing an agenda for change involves exposing people to alternative ideas and experiences or helping them to look again at what they know from a different perspective.   When city-based architects decended on rural Aboriginal communities as part of the Whitlam Labor Government’s attempt to start to address the nonexistent or inadequate housing provided on many communities they asked the Aboriginal people what sort of housing they wanted and often the indigenous response was to point to the superintendent’s house on the hill and say “one like that one”.  The architects  had the job of ascertaining exactly what the Aboriginal clients wanted from their houses before attempting to provide alternative designs which incorporated the desires of the Aboriginal people. Many of the long term white employees of the Northern Territory Welfare Branch, which had responsibility for the ‘welfare’ of Aborigines, also had their horizons as to what constituted ‘suitable’ Aboriginal housing limited by the inadequate housing which already existed on stations and settlements.   One of the authors visited Pine Creek during this period and was shown by an obviously delighted patrol officer 6 different models of houses one of which he said had been decided upon by the local community as ‘the design of their choice’. On lifting the roof off all six scale models it was obvious that the choice offered came down to very minor design differences.   In the period since indigenous communities have been exposed to a wide variety of housing designs and would no longer allow their professionals and advocates to so constrain their options.

In attempting to set a liberating agenda the views of the people who are most substantially affected by that change must be the overriding factor.  This means that those who are concerned to promote the interests of people with an intellectual disability have an obligation to find out exactly what it is that people with an intellectual disability want and then help them articulate their desires.  Just accepting the difficulty of coming to understand another’s needs is exemplified in the following story.  One of the authors whilst working with Social Security visited a client identified as suffering from paranoia.  This author indicated he was from ‘the Government and was there to help’.   The client replied:

You weren’t born where I was born. You were not brought up by my family.  You have not done the things I’ve done. You have not seen the things I’ve seen.  You have not led the life I’ve led.  You are not me.   You can not understand me.  You don’t know what I want.  You are not me.  You don’t speak for me.

In coming to consider a program which, if adopted by government, might become an agenda for change the first steps are:

  • expose people with an intellectual disability to the alternatives;
  • work to ensure they have considered the alternatives from as many perspectives as possible;
  • ascertain what people with an intellectual disability want; and
  • link the proposed agenda to general human rights principles or basic human needs.

In the 1990s it is inconceivable that a white Australian would seriously presume to speak for indigenous Australians and yet it is less than twenty years ago that white Australians attempted to monopolise the debate on Aboriginal issues.  Many white advocates assumed that indigenous people were incapable of speaking for themselves.  How is it that the same population which now recognises Noel Pearson, Marcia Langton, Gurrawuy and Manawuy Yungingpingu, Louis O’Donohue, Peter Yu, Geoff Clark, Michael Mansel and others as outstanding advocates of their people can be blind to the need to listen to and promote those who are capable of speaking in the interests of people with whom they share an intellectual disability.  It is only 30 years ago that the president of the NSW Blind Society thought it inappropriate for a blind person to stand for a committee position on the board of this Society.  This president, a medical doctor, went on to suggest that such a candidate would have no knowledge of blindness.

There is clearly potential to facilitate the greater involvement and participation of people with disabilities in all advocacy efforts, as required by the standards expected of all DSA funded services.  A more fully representative advocacy group has a greater potential to influence disability issues on the mainstream agenda, because citizens and governments are more likely to respond to the claims made by those with disabilities than to the utterances of their advocates.

Recent research indicates that it is common for disability advocacy groups to have little or no participation by the members of the constituency they purport to represent, or at best have token representation (Robinson 1997, 1).  This research also indicates a number of different factors that contribute to the lack of representation, none of which are related to people’s in-ability to contribute in such groups (Robinson 1997, 3-5).  Ryan (1997) has promoted ‘active citizenship’ as a means by which to promote rights into practice, at all levels of participation:

Being able to participate in decisions which affect our lives is important for our capacity to understand and act on (rather than to be acted upon) the forces that shape our circumstances.  These ideas are based on the notion that active participation is a vehicle for people to simultaneously educate themselves about the processes that shape their lives and at the same time develop the capacities to shape the institutional structures by collective action and political dialogue (Ryan 1997, 20).

A strong, self-determining advocacy effort, that is truly representative of people with intellectual disability, will better prepare people for dealing with their everyday services, and to lobby for the other issues in the mainstream political arena.

The active participation by people with intellectual disabilities in campaigns to achieve the above, will help to elevate the status of their issues to the mainstream agenda, and in the process provide further opportunities for political education and personal development for those individuals who participate.


When we have tried to influence the current disability debate we have chosen to tie our suggested improvements to changes which link entitlements of people with intellectual disabilities into a context of generalised rights which would, if adopted, either advance the freedom and opportunites of all Australians or which would limit  repression and neglect (Bleasdale and Tomlinson  1996; Bleasdale, Crumpton, Hardaker and Tomlinson 1996).  In tying our advocacy to issues such as a Bill of Rights or a basic income we are advocating for an extention of our own rights as we advocate the rights of others.   In arguing for an end to neglect or repression of others we free ourselves of the fear of being subjected to, or complicit in, such acts of tryanny.

With the benefit of hindsight, it may be possible to say that advocacy in general might have done better to have concentrated initially on generalist goals, and then to build on their accepted credibility (as activist and lobby groups) by pursuing later what, on the surface, seem to be “specialist” aims, but which turn out to be inclusionist and in the general interest.  For example, the move toward physical accessibility in our communities (in buildings, landscapes and public transport) is largely perceived as a “disability issue”, but it has benefited large sections of the community who are not identified as having disabilities, such as older people, people with prams, strollers, shopping trolleys, as well as people who are wheelchair mobile, and people who walk with the aid of sticks and frames.

In order to get back on track the advocacy movement needs to focus on the principle of self-advocacy.  We acknowledge Parsons’ (1994) concern that self advocacy not be seen as the totality of advocacy activity.  We suggest that Parson’s statement:

… there can be very real dangers seeing self advocacy as the only real means by which a person with a disability can become empowered, the only real means by which their advocacy can be legitimately carried out (Parsons 1994, 60-61).

might be rephrased:

… that self advocacy can be viewed as an important means by which a person with a disability can become empowered, that self advocacy needs to attract greater levels of resourcing to achieve this purpose, and that advocacy done by people without disability on behalf of people with disability be regarded as one limited means by which successful advocacy can be legitimately carried out.

Self advocacy should be embraced by all who claim to be interested in advancing the interests of those with an intellectual disability as a strategy as well as a discrete type of advocacy organisation.  Just as Parsons has suggested (Parsons 1994, 61), all disability advocacy organisations and peaks should have the active, real and visible involvement and leadership of those whom they claim to represent.


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