Tom Shakespeare & Nick Watson. Handbook of Disability Studies. Editor: Gary L Albrecht, Katherine Seelman, Michael Bury. Sage Publications. 2001.
This chapter surveys the development of global disability politics and analyzes some of the key dimensions of the political activity of disabled people. This first section will introduce some of the concepts and levels of analysis that enable us to understand the scope and evaluate the impact of disability politics. The second section will give an overview of the way different areas of the globe have witnessed disabled people mobilizing as a political force since the late twentieth century. While space limits our discussion, we hope to give a flavor of the extent of disability politics and some of the distinctive features of the different global political arenas. In the third section, we begin to analyze the various forms of representation and involvement that are characteristic of the diverse disability groups and structures that have developed. Finally, in the fourth part of the chapter, we discuss what all this activity means. How can we judge the success of disability politics? Will the movement continue to flow, or has the tide of political mobilization begun to ebb? And, most important, what impact has disability politics had on the lives of the planet’s estimated 450 million disabled people?
The late twentieth century brought radically new forms of political protest (Boggs 1986). Historically, mobilization around the claims of religion, class, and nationalism has been dominant. Politics has been, on one hand, a matter of violent social upheaval and, on the other hand, a matter of governments and parliaments. However, since the second half of the twentieth century, new social movements have arisen from hitherto invisible constituencies such as African Americans, women, lesbians and gay men, and, most recently, disabled people. Each wave of political protest has self-consciously modeled itself on those movements that have come before it. The new social movements have challenged the structural exclusion and disempowerment of their constituencies within both the state and the economy but have also served to create positive political identities on a local level. That is, as Alberto Melucci (1989) has written, the new politics operates both instrumentally and symbolically to achieve an improved social role for minority communities. In feminist terms, the personal is political.
Part of the newness of this identity politics is the use of different tactics to achieve change. Mainstream politics has relied historically on three strategies: electoral and parliamentary activity, forms of oppositional violence and terrorism, and workplace strikes, occupations, and other economic actions. The new identity politics, along with the new environmental and peace politics, has, in the main, developed nonviolent direct action as a response to exclusion from the processes of parliamentary democracy and lack of economic leverage. Direct-action protests have been a way of bringing the minority group message to public attention, particularly through publicity in the mass media. In the case of disabled people, direct action has enabled the movement to expose very directly the cause of disability oppression—for example, inaccessible buildings and transport systems or patronizing charity events. It has also challenged the prevailing view of disabled people as incapable, as lacking power and agency, and as pathetic victims of dysfunctional bodies and minds (Morris 1991).
In a sense, disability politics has been about establishing that disability is a political issue at all. Disability has never been on the agenda of mainstream political parties. Disabled people have not been seen as a collective group but merely as a series of individuals suffering impairments. Disability has not been considered as a matter of political power and oppression but as the outcome of physical incapacity and as the domain of medical and welfare professionals. Nancy Fraser (1989) has distinguished three political stages that correspond to the emerging disability politics. First, there comes the struggle over the political status of a given need. Second comes the debate over the interpretation and definition of the need. Third comes the struggle for the satisfaction of that need. So, for example, there was considerable opposition in the United States and in Britain to the idea of civil rights for disabled people: American politicians found it difficult to move away from the philanthropic attitude toward disability, while for a long time, British politicians could not accept that disabled people faced discrimination (Doyle 1996). While in Britain and America, disability politics has moved to the second and especially the third of Fraser’s areas, in other parts of the world, the battle is still to establish the political status of disability.
Building on Fraser’s (1989) approach, we would argue that three elements in considering the politicization of disability clarify what sort of a political claim is being made. First, there is the basic argument that disabled people are a disadvantaged or marginalized constituency. The evidence for this is overwhelming. A report for the United Nations states,
[Disabled people] frequently live in deplorable conditions, owing to the presence of physical and social barriers which prevent their integration and full participation in the community. As a result millions of disabled people throughout the world are segregated and deprived of virtually all their rights, and lead a wretched, marginal life. (Despouy 1993:1)
Now, political elites usually accept this sense of disability as a political issue. Second, there is the claim that disabled people comprise a distinct minority and that disabled people themselves should initiate and lead social change for this group. In other words, disability is the sort of political issue that revolves around identity politics. Because nondisabled people, including professionals, families, and charity workers, have dominated the disability field, this second meaning of political involves a more radical challenge for the mainstream. Third, there is the social model of disability. This approach redefines disability. Rather than identifying disabled people in medical or individual terms, disability is defined as the way societies deal with people who have impairments. That is, people are disabled by society, not by their bodies. Disability is about discrimination and prejudice, not physical or mental incapacity or limitations (Oliver 1990).
This chapter will deal with these different dimensions of disability politics, conceived of as the challenge issued by the disability constituency to traditional political structures and values. The backdrop to the discussion are the stages outlined by Nancy Fraser (1989), supplemented by our threefold distinction in terms of what disability politics implies, and finally the three levels of political change that disabled activist James Charlton (1998) has identified. These levels comprise social change that occurs at the level of meaning (labels), changes to relations of daily practice (e.g., the response of professionals and caregivers to impaired bodies), and changes at a macro level (e.g., new legislation, policy, etc.). Like other new social movements, disability politics is about changing governmental responses, changing relations at an interpersonal level, and changing identities at an individual level.
Political identity is the crucial element of the new politics. The mobilization of disabled people themselves creates the distinction between traditional philanthropic or social democratic approaches to solving the problem of disability and the modern acceptance that disabled people have to be recognized both as a minority group and as the experts on their own lives. Identity often arises out of a consciousness raising—what Paolo Freire (1972) calls conscienticization in which disabled people come to understand that their difficulties arise not primarily from their own bodies or minds but from the way society has treated them. As Charlton (1998) states,
The critical consciousness that emerges from this position may lead some people to adopt the disability activist subject position which can involve street level political action or challenging and transforming the organisations for the disabled to become organisations of disabled people and so on. In this sense, to name disability as social oppression is not the defeated wailings of victims, but the clarion call of social change agents. (P. 192)
The Deaf community provides one example of this mobilization. During the 1970s, deaf people began organizing as a social movement, challenging the idea that they were impaired and defining themselves increasingly as a linguistic minority, using the model of ethnicity. In this period, slogans such as Deaf Pride and Deaf Power became popular. One of the culminations of this new deaf identity and political consciousness came with the successful 1988 Deaf President Now protest at Gallaudet University. After the appointment of a hearing president at this university for the deaf, students exploded into political action, closing down the college to demand that the Board of Trustees appoint the first deaf president in the school’s history. As two analysts commented,
The transformation involved deaf persons: (a) identifying themselves as members of a community sharing common values and traits (e.g., sign language) and (b) evaluating the group and its values and traits in a positive light. Ironically, as a group’s members come to value themselves after a long period of self deprecation, the consciousness-raising can lead to anger, resentment, and political action over the perceived injustices. (Rose and Kiger 1995:522)
The same anger can be seen in the direct action of disabled people in many countries (which is well documented in Charlton 1998).
Yet the stress on identity raises questions, which we will also address in this chapter. How far does the disability movement represent all disabled people? To what extent are differences between different groups of disabled people—for example, deaf people and people with physical impairments—potentially undermining of the idea of a disabled minority group? Does the development of identity politics threaten to reinforce disabled people’s status as different rather than truly to open up the mainstream to the inclusion of people with impairments?
One example of the problems of political identity comes in the field of learning difficulty. Social psychologists have found that people with learning difficulties are not always prepared to identify with that label (Finlay and Lyons 1998). Self-advocacy can either involve trying to change the perception of the group to which one belongs or trying to secure change for oneself as an individual. Collective action depends on identification with the wider group. The strategy of political movements such as People First, which are based on acknowledgment of the learning difficulty identity, and a challenge to its stigmatization may be limited because of the unwillingness of others to identify as having learning difficulties. The same problem applies to other groups of disabled people. For example, many disabled children do not identify themselves as disabled but see themselves as “just the same as everyone else” (Priestley, Corker, and Watson 1999). Many disabled adults do not want to identify themselves as disabled or to be part of disability politics, perhaps because other parts of their identities (race, gender, class) are more salient or perhaps because they prefer to win acceptance as individuals who happen to have but are not defined by their impairments.
This chapter, then, will raise questions and survey the field. We will address the relative importance of broader political goals versus the personal empowerment of individuals. We will explore the extent to which disability demands a rethinking of conventional political concepts such as equality, justice and citizenship, and democracy. Finally, we will assess whether the changing experience of disability is attributable to the demands of the disability movements or to changes in macro-political and economic relations.
One of the most important findings from interviews with more than fifty disability rights activists in ten countries is the similarity of lived disability experiences across cultures and political-economic zones. It is also clear that in the most disparate places, the disability rights movement approaches and resists the particularities of the disability experience in very similar ways. (Charlton 1998:4)
The disability movement is a global phenomenon. In the fourth quarter of the twentieth century, disabled people mobilized to demand social change in almost every country. In 1998, the Fifth World Assembly of Disabled Peoples’ International was held in Mexico City. Nearly 2,000 delegates attended, representing some 78 countries. A network of international disability activists, sharing insights and strategies throughout the world, accounts for the similarities identified by Charlton (1998). Yet there is another dimension that his overview does not capture. The status of disabled people and the ways in which different societies deal with disability have to be related to the particular structures and traditions of different countries. Key determinants of disabled people’s experience will be the level of economic development of a society and the strength of its economy, the extent of the welfare state and the residual role of family support, and the role of religious organizations and charities. The radical social approach to disability has been exported across the globe, and because of this, particularly the impact of United Nations’ (1993) Standard Rules on Equalization of Opportunities for Disabled Persons, many countries have introduced civil rights legislation in response to pressure from disability groups. Yet no law is a panacea, and the effects of mobilization and legislation will be different in each country.
This discussion cannot do justice to the diversity of responses and experiences internationally, due to limitations of space and the availability of data to the authors. However, we will start by outlining the key dimensions of disability politics in the United Kingdom, United States, and Australia before discussing the salient differences between various European situations, as well as the role of European Union politics. Finally, there will be a brief discussion of disability politics in the “majority world” before a concluding summary of politics at a United Nations level.
The earliest social mobilization of disabled people in Britain dates from the interwar period, when the National League of the Blind and Disabled marched in protest at the poverty experienced by disabled people. However, it was the formation of the Disablement Income Group (DIG) by two disabled women in the late 1960s that marks the first stirrings of the disability movement. Yet, DIG included nondisabled people as well as disabled people and had limited objectives centering on improvements to welfare benefits. A more radical network arose from a letter written by Paul Hunt, a resident of a charitable institution, to The Guardian newspaper, suggesting that disabled people organize a consumer group. By 1974, this had led to the formation of the Union of Physically Impaired against Segregation (UPIAS), a radical grassroots network that formulated what Oliver (1983) later termed the “social model of disability” in its key publication, Fundamental Principles of Disability (UPIAS 1976). At the same time, other groups such as Sisters against Disablement and the Liberation Network of People with Disabilities were developing the idea of disability as a social oppression. In 1981, the various self-organized groups came together to form the British Council of Organisations of Disabled People (Campbell and Oliver 1996).
During the 1980s, coalitions of disabled people and centers for integrated living developed across the country. Campaigning on a range of issues to do with access and representation and using direct-action tactics brought disability politics to national attention. The new groups challenged the right of traditional unrepresentative charities to speak on behalf of disabled people. The introduction of community care enabled self-organized groups to start delivering a range of independent living services funded by the local state. However, the major political demand was the introduction of a civil rights law, a campaign that brought together both the traditional disability charities and the radical groups under the Rights Now umbrella. During the Conservative governments of 1979 to 1997, there was a reluctance to concede that disabled people experienced discrimination, and successive attempts to introduce legislation failed. Eventually, in 1996, the Disability Discrimination Act was passed, although this did not deliver comprehensive and enforceable civil rights. Extensions of the law by the new Labour government were also accompanied by attacks on disabled people’s benefit entitlements in an attempt to control government spending. Meanwhile, the target of the radical Direct Action Network changed from an emphasis on winning accessible transport to a “Free Our People” campaign inspired by American struggles to liberate disabled people from nursing homes and other institutions.
The United States has a different tradition of protest and social reform than does Britain and much of Western Europe. Factors explaining the different developments of disability politics include the absence of a developed welfare state, strong trade unions, and socialist parties; the strong emphasis on rights, expressed in a written constitution; and the fullest development of the free market and competitive values (Oliver 1990:121ff). This political environment shaped the development of American disability politics, which has incorporated the philosophy of self-determination, equal opportunities, and self-respect for disabled people. Located within the American tradition of self-reliance and individualism, the U.S. disability movement followed the example of the civil rights movement, the women’s movement, and the lesbian and gay liberation movements that preceded it (De Jong 1983:11). Whereas their European counterparts have laid more emphasis on collective mobilization to challenge the status quo and the structure of society, these American movements have been concerned with winning access to the mainstream for excluded sections of the population. Another key feature of the U.S. disability movement has been the origins among the young male disabled veterans of the Vietnam War. The main organizational advance came with the first formation of independent living centers, run by disabled people for disabled people, initially on the campus of the University of California, Berkeley.
Due to the lobbying of disability organizations, campaigners managed to secure the passage of the 1973 Rehabilitation Act, with its historic Section 504, the first example of antidiscrimination legislation (ADL). However, the greatest fight came after this victory, in trying to bring about the enactment of the clause that prohibits discrimination against disabled people in any federally funded program. When, in 1977, Secretary of Health, Education, and Welfare (HEW) Joseph Califano refused to sign Section 504, 300 activists organized a 30-day occupation of the HEW office, both highlighting the role of structural discrimination and challenging the stereotype of disabled people as powerless (Zola 1983:56). The same year, the White House Conference on Handicapped Individuals called for civil rights legislation for disabled people. A federal agency, the National Council on Disability, submitted draft legislation in 1988. After George Bush was elected president, the legislation was resubmitted and in 1990 became the Americans with Disabilities Act (ADA), extending discrimination protection to the private sector.
A large element of the movement in North America has stemmed from consumerism and self-help; for example, in the independent living centers, this emphasis plays a large part. This is a particularly American tradition of self-reliance and individual rights. Many writers focus on consumer involvement, whereas British approaches would stress political autonomy and democratic participation, not the market. Until recently, the social model has not been a part of U.S. disability discourse. Gareth Williams (1983) criticizes the market pluralist models of De Jong (1983) and others, seeing their faith in consumer sovereignty and self-reliance as being misplaced in the context of power imbalance. American disability campaigns focus on admitting disabled people to wider society, demanding the extension of existing social rights to them as a group. Pfeiffer (1996) suggests that American disabled people feel empowered as a result of the ADA and points to the evidence of barrier removal, although problems and hence frustration remain. Equally, it might be pointed out that more than half of disabled Americans live in poverty. Albrecht (1992) has highlighted the limitations of civil rights strategies:
The problem with this approach is that it accomplishes little or nothing for poor and marginal Americans. Grass roots activism is confined principally to the educated middle class who are savvy about lobbying. The poor and marginal Americans do not represent themselves well and are not effectively represented by liberals. The result is that those most in need of services are least likely to receive help, especially in economic hard times. (P. 300)
As the African American experience also demonstrates, civil rights may bring formal equality but without the achievement of an improved standard of living or equality of outcome.
In Australia, as in many other countries, the 1981 United Nations Year of Disabled People provided the impetus around which disability politics coalesced. Like in Britain, the American model of independent living and civil rights was an important influence. A long period of Labour government facilitated moves toward normalization and independent living, and grassroots disabled people—especially networks of disabled women—mobilized to demand change. Organizations such as Disabled Peoples’ International (Australia) and the National Federation of Blind Citizens Australia campaigned against the Miss Australia pageant and for better provision.
Legislative developments included the Disability Services Act of 1986, which recognized the need for advocacy services, and the Disability Discrimination Act of 1992. The latter law, like its later British equivalent, has little teeth, leaving it up to individuals to complain about discrimination. Unlike in America, the standards for implementation of such statutes are drawn up after it becomes law, and Australian disability rights groups were not fully involved in this process.
With the change to a Conservative coalition government after 1996, the high-water mark of disabled political influence in Australia has passed. The Human Rights and Equal Opportunity Commission was cut back, resulting in the abolition of the Disability Discrimination Act commissioner post. Cuts to budgets affected disabled people, and major disability rights groups were defunded. Newell (1996) traces a shift from the language of rights to the language of consumerism in recent Australian disability politics. So, for example, DPI (Australia) has collapsed, while the National Caucusof Disability Consumer Organizations has emerged, made up mainly of mono-impairment groups, not all of which are even controlled by disabled people. Women with Disabilities Australia is the only cross-impairment and disabled-controlled organization in the National Caucus. Part of the decline of disability politics has to do with the change of government and political culture. Another part has to do with the difficulty of organizing nationally in a country of Australia’s vast scale. Yet Cooper (1999) argues that it is wrong to confuse the fate of particular organizations with that of the disability movement as a whole:
While the political power of people with disabilities is most easily seen in national specific disability organisations debating issues with government policy makers a greater power is with the myriad of individuals and small groups, working mostly without funding, but armed with anti-discrimination legislation, and engaged in access battles. Maybe this is how our diverse society works best. (P. 225)
Returning to the European situation, Rachel Hurst (1995) has argued that there are three subregions within Europe. First, the Nordic countries and the Netherlands have a long tradition of human rights and equal opportunities. Together with economic stability, this has enabled a financial commitment to service provision, as well as the inclusion of consumers in the consultation process. The Scandinavian welfare state has been the most advanced in the world, and disabled people have benefited from good services, rehabilitation aids, integrated education, and a 20-year-old tradition of community rather than institutional housing. Yet, paradoxically, these benefits have resulted in a disabled population lacking radicalism and a positive identity. According to Hurst,
This has bred a comparatively comfortable, passive body of disabled people whose organisations are well-funded and consulted by the state and who, because of their individual situation, do not have the impetus to demand change. (P. 530)
These countries are falling behind those nations in which the disability movement has had to fight for progress. For example, they lack equal rights legislation. Moreover, there is a lack of access to public buildings or transport, public attitudes remain largely negative, and there is little employment choice for disabled people.
Hurst’s (1995) second group are what she calls the “colonizing countries,” such as Britain, France, Germany, and Spain, which have been characterized by a paternalistic attitude to disability. Charities and religious organizations are important, and professionals tend to be in charge. Disabled people have experienced a lack of services, environmental barriers, and an absence of proper consultation. All these countries have antidiscrimination legislation, but none has mechanisms for enforcement. For example, Spain has had blanket laws against discrimination since the 1980s but has not been effective in delivering civil rights for disabled people.
Finally, Hurst (1995) aggregates the “poorer countries,” such as Portugal, Italy, Ireland, and Greece, where a similar ethic and attitude predominates, but there is no meaningful social provision. Available resources tend to go to segregated projects run by professionals, the voice of disabled people is weak, and there has been no active grassroots disability politics. To Hurst’s tripartite classification, we should add Central and Eastern Europe. In these areas, there is an ideology of egalitarianism and a strong welfare state. The collapse of communism has not brought major benefits to disabled people, who have been victims of the general economic dislocation, unemployment, and poverty. Except for Poland, religious organizations have been weak up to this point, although the legacy of state socialism is a lack of grassroots action and community politics. As with Hurst’s third grouping, the family is a key element in support for disabled people. For the short term, the status of disabled people will be reduced. In the long term, international models of independent living and political identity may reduce dependency and improve the status of disabled people. For example, Hungary brought in a civil rights act in March 1998 after the National Federation of Disabled Persons Associations of Hungary (MEOSZ) organized street demonstrations and lobbying in response to government backtracking. The Rights and Equal Opportunities Act promotes disabled people’s citizenship, educational inclusion, accessibility, and barrier removal.
These different European situations are likely to standardize in the future, as activists draw on the experience of other countries. This international networking has also operated at the scale of European institutions. The European Union (EU) has run the HELIOS and HELIOS 2 programs on disability. However, these have not been controlled by disabled people but instead have been dominated by civil servants, charities, and professionals. Disabled Peoples’ International Europe has lobbied the European parliament for more consultation and for human rights work on disability. This has led to changes in structures such as the European Disability Forum and in the HELIOS2program. A key development occurred on December 3, 1993, the International Day of Disabled Persons. Despite initial opposition, a disabled people’s parliament convened in the European Parliament building. The president of the parliament, commissioners, and other politicians listened to speeches from 81 of the 440 delegates telling their stories. This led to a major change in European political attitudes, acceptance of disability as a human rights issue, and support for the United Nations standard rules (Hurst 1998). While in the 1980s, the European Parliament and European Commission focused on the issue of quotas for employment, in the 1990s, there was a move toward the issue of disability discrimination (Waddington 1997:475).
Finally, we need to make some general observations about the majority world, which will be covered more extensively in other contributions to this volume. While in Europe, America, and Australia, we have noted campaigns for independence and integration, in much of the rest of the world, disability movements have to settle for whatever provision they can get. Yet, as Coleridge (1993) points out, self-organized campaigning and services have been a feature of many developing countries (e.g., Zimbabwe, Nicaragua, and India). Such countries, such as Uganda, Zambia, Madagascar, and many other nations, have passed civil rights statutes for disabled people during the past decade (Charlton 1998). International networking has played a major part in spreading disability politics into different countries. For instance, Narong Patibatsorakit attended the first DPI World Congress in Singapore, returning home to found the national Thai disability organization. In 1996, he became the first disabled person in Thailand to be elected to the country’s senate.
While poverty and underdevelopment negatively affect disabled people in particular, transition to urban industrialized status offers threats as well as opportunities for disabled people. If assumptions and attitudes about disabled people are negative, then economic development may be based on their exclusion from public life and will be more disabling. Examples from Malaysia illustrate this problem. Disability activist Thanasayan suggests that the Malaysian public believes that “the disabled do not need access to public buildings facilities because they remain at home or in specialised institutions” (Jayasooria, Krishnan, and Ooi 1997:459). Second, the new light rail transit system in the Klang valley will be inaccessible to disabled people, evidence that leads authors to conclude that “Malaysia has missed a unique opportunity as a newly industrialising country to develop infrastructure that is accessible for all its people” (Jayasooria et al. 1997:459). Third, while traditionally the family has provided for its disabled members, largely through the work of women, industrialization will undermine this. With the transition from rural to urban living and the employment of women, disabled people are left without support. These Malaysian problems may well be replicated in other recently developing countries.
Finally, the impact of international politics cannot be ignored. United Nations activity started in 1975, when the UN General Assembly adopted the Declaration on the Rights of Disabled Persons. The 1981 International Year for Disabled Persons was the impetus for disability movements in many countries. It was followed by the UN Decade of Disabled Persons 1982-1992, which brought the World Programme of Action that focused on prevention of impairment, rehabilitation, and the participation and equal opportunities of disabled people. The period saw a shift toward an enablement and empowerment approach, rather than one based on narrowly medical and individual issues. Reflecting the increased stress on human rights, the United Nations adopted the Standard Rules on the Equalization of Opportunities for Persons with Disabilities in 1993. While this instrument takes the form of legal recommendations rather than binding statutes and tries to balance a medical and social model approach, it has been highly influential in levering change throughout the world. Whether the many new laws it has inspired represent merely formal equality of opportunity or will result in significant improvements in quality of life and status for disabled people remains to be seen.
While most countries of the world have witnessed the development of political groups of disabled people, organization has taken multiple forms. Traditionally, responses to the problem of disability have been based on a medical approach. This means that different impairments have been catered for by different charities or self-help groups. While the former may have developed from religious impulses, the latter may have been initiated by doctors specializing in a particular condition, often in alliance with the parents or families of people affected. So, the political landscape of disability is often already occupied by groups that are not only not controlled by disabled people but also fail to see that different impairment groups may have many issues in common.
In fact, Oliver and Zarb (1989) suggest that the separation of different impairment groups is not accidental. They point out that the British state delivers services in ways that foster divisions in the disabled population:
Hence it gives tax allowances to blind people but not to other categories of disability, mobility allowances to those who cannot walk but not for those who can, and higher pensions and benefits for those injured at work or in the [armed] services than for those with congenital disabilities or those who have had accidents. This is not an unintended consequence of State provision but a deliberate tactic which the State has developed in its dealings with other groups and can be summed up as “divide and rule.” (P. 222)
Whereas cross-impairment groups, on a local and national basis, are now a common feature of many European countries, in other parts of the world, the dominant groupings are still based on specific medical diagnoses.
The distinction between mono-impairment and multi-impairment groups is not the only division in the disability constituency. As noted earlier in this chapter, another major cleavage runs between those groups that are controlled by disabled people (and often allow only disabled people into full membership) and the more traditional groups, which are dominated by nondisabled people (whether they are the families of disabled people, professionals, or people inspired by philanthropic motives). Historically, it is the latter groups that have had access to power in the political arena and to most of the funding available from governments. A considerable proportion of disabled political mobilization has been directed toward either winning control of these organizations or challenging their right to speak on behalf of disabled people.
But these distinctions do not exhaust the differences within the disability constituency. Rights-based disability groups themselves come in different shapes and sizes. For example, Charlton (1998:136) distinguishes 10 different types of disability rights organizations:
- Local self-help groups (e.g., Self-Help Association of Paraplegics/Soweto)
- Local advocacy and program centers (e.g., Centres for Integrated Living)
- Local single-issue advocacy groups (e.g., Acesso Libre in Mexico City)
- Public policy groups (e.g., World Institute on Disability, Oakland, USA)
- Single-issue national advocacy groups (ADAPT—USA)
- National membership organizations (Organisation of Disabled Revolutionaries, Nicaragua; National Council of Disabled Persons Zimbabwe; Women with Disabilities Australia).
- National coalitions/federations of groups (British Council of Disabled People)
- National single-impairment organizations (National Association of the Blind—India; British Deaf Association)
- Regional organizations (Southern African Federation of the Disabled; Disabled Peoples’ International Europe)
- International organizations (Disabled Peoples’ International)
However, these different forms of representation and involvement are not necessarily all competing. Many structures are needed to play complementary roles and take on different tasks. For example, some groups, such as ADAPT or Britain’s Direct Action Network (DAN), are involved in direct political action. Often, these groups involve a small number of individuals (approximately 500 members of ADAPT and nearly 100 members of DAN). Other groups may be prevented from such overt campaigning due to the legal restrictions placed on charities in countries such as Britain. Again, some groups are involved in consciousness raising and community development, either in a particular locality or among a particular impairment group.
Distinguished from these activist networks are the organizations, often set up in the second wave of disabled political activity, which are involved in service delivery. For example, many countries and regions of the world now have centers for integrated living, which provide advice, support, and services for disabled people at a practical level. Other groups may be involved in delivering training or developing access initiatives. Sometimes, these groups may lose the political edge or impetus that was the hallmark of their early life. Paid employees replace committed activists. Groups may become incorporated into mainstream public policy and welfare provision. There may even be a danger of complacency—of thinking that the battles have been won or failing to develop new generations of politicized disabled people. Charlton (1998) notes that there is a distinction between those militants who continue to take to the streets and the many organizations and individuals in the independent living and disability rights community who are not radical or are only narrowly political.
These changes may undermine the dualism that was the core of early disability politics between those organizations that were “for” disabled people—the traditional charities and paternalistic groups—and those organizations that were “of” disabled people—the radical rights-based groups. Due to the very success of the disability politics, the model must now embrace at least two other variants: (1) those traditional “for” organizations, which have moved to take onboard the disability rights approach and have become more responsive to and representative of disabled people and their priorities, and (2) those “of” organizations, as discussed above, which have become consolidated into the mainstream and have perhaps lost their radical edge.
Rather than the triumphalism, which is a characteristic of many discussions of disability politics, perhaps a note of caution is needed in analyzing the phenomenal explosion of the disability movement in recent decades. Questions need to be raised about the extent to which groups truly represent the majority of disabled people, particularly people in more excluded impairment categories or multiple minority groups. The intention is not to discredit disability organizations, and it should be noted that the criticism of the “unrepresentativeness” of political groups is often raised by their opponents. Instead, the analysis is intended to point to ways forward and to problems still to be addressed in the developing politics of disability.
The disability movement in many countriesis dominated by a somewhat restricted section of the impaired population. For example, in Western countries, approximately half of all people with impairments are older than age 50. Yet most activists enter the movement at a much younger age, and older people who have impairments neither make up a significant proportion of the movement nor are as likely to identify with a civil rights perspective. Again, there have been persistent questions about the role and involvement of particular impairment groups. For example, people with learning difficulties may have been excluded because their particular access and language issues have not been properly understood or because they have not been welcomed. Some disabled people have sought to bolster their own status as people with physical impairments, at the expense of those with intellectual impairments. Another example is the Deaf community, which has resisted identification with the mainstream disability movement. Often, this is because deaf people see themselves as a linguistic minority, not as people defined by a medical condition. Of course, some disabled people themselves have rejected a medical identity, so perhaps the problem is less one of definition and more about separate cultures (Corker 1997). More of a problem is that dominant disability rights demands, such as inclusive education for all disabled children, are rejected by the Deaf community, which wants its children educated separately via the medium of sign language.
Aside from differences of impairment and age, other social cleavages are also evident in disability politics. Feminists have often criticized the disability movement for sexism and the exclusion of women’s issues. Minority ethnic communities in some countries have felt ignored by disability groups dominated by the majority population. Lesbian and gay disabled people have experienced homophobia or have felt unwelcome in disability organizations that have taken on radical disabled perspectives but may be very conventional in terms of sexual politics. Finally, access to economic and social power is a strong determinant of the life experience of disabled people in general and also influences involvement in disability politics. Many leaders of the movement have come from privileged socioeconomic contexts.
Another set of questions relates to the relevance of ideologies such as the social model to different cultures. A graphic example of this is the problem of translating the difference between physical impairment and disability as a social relationship into languages other than English. Debates about terminology are ubiquitous in disability circles but are made more complex when languages such as French or Chinese or sign language may have trouble representing disability in nonmedical ways. Is an idea that was devised in developed Western countries straightforwardly applicable to very different cultural contexts? Do Western aid organizations such as Oxfam or the disability movement have the right to impose this model on other cultures? Emma Stone (1999) has demonstrated how developing new Chinese ideograms has connected with positive political change around disability in China, yet she also suggests that “only time will tell whether the transplant of Western-evolved disability discourses into non-Western contexts works for or against the lives of individual disabled people” (p. 146).
Again, how far should disability rights be balanced with the broader needs of developing countries and the majority population? As Potts (1998) asks in the context of education, “How far does the recognition of individual civil rights, including that to an appropriate education, get in the way of making economic progress?” (p. 121). The impetus for many countries’ disability movements came when individuals attended world congresses of Disabled Peoples’ International and brought back with them organizational and ideological ideas derived from other countries. This has been a great strength of disability politics, but perhaps it has also led to some inappropriate and possibly even ethnocentric developments. In Britain and America, nondisabled family members and allies are not usually welcome in the disability movement; however, in other cultures, a more inclusive model may be preferred.
There are also tensions and contradictions within the dominant ideology of disability rights. For example, there is a subtle but important difference between the minority group model and the social model. The former focuses on disabled people as a minority group, experiencing oppression and seeking social change. The latter focuses on disabling barriers and building an inclusive society but does not necessarily specify a constituency or change agent. Strategically, there may be a tension between a minority group approach, which rests on raising the status and situation of an identified constituency of disabled people, and a social model approach, which depends on removing barriers and changing society in general. This philosophical distinction is glossed over in practical disability politics because the minority group and social model perspective are so closely entwined in radical consciousness.
This distinction relates closely to another dilemma, which comes out most clearly in Helen Liggett’s (1988) critique of minority group politics and draws on Foucauldian ideas. Disability politics, by its very nature, often rests on a fairly unreflexive acceptance of the disabled/nondisabled distinction. Disabled people are seen as those who identify as such. Disabled leadership is seen as vital. However, Liggett argues,
From an interpretative point of view the minority group approach is double edged because it means enlarging the discursive practices which participate in the constitution of disability…. In order to participate in their own management disabled people have had to participate as disabled. Even among the politically active, the price of being heard is understanding that it is the disabled who are speaking. (Pp. 271ff)
Many disabled people do not want to see themselves as disabled, in terms of either the medical or the social model. They downplay the significance of their impairments and seek access to a mainstream identity. They do not have a political identity because they do not see themselves as part of the disability movement either. This refusal to define oneself by impairment or disability has sometimes been seen as “internalized oppression” or “false consciousness” by radicals in the disability movement. Yet this attitude itself can be patronizing and oppressive. After all, the denial of disability is implicitly based on the rejection of the idea of an exclusive “normality” and a refusal to be categorized. This approach may be rather individualist and may overlook the problems of discrimination and prejudice. However, surely it is a legitimate alternative to a minority group approach, which leaves the disabled-nondisabled dichotomy unchallenged and runs the risk of replacing an idea of disabled people as victims of their bodies by the idea of disabled people as victims of social relations.
These dilemmas point to the complexities and contradictions of disability politics. While the politics of gender, sexuality, and “race” can hardly be said to be straightforward, issues of representation and organization are perhaps most difficult in the field of disability. To conclude this discussion, we want to highlight a recent social development—namely, the self-organization of people with neurological differences. This example illustrates both the opportunities and difficulties posed by disability politics. Judy Singer (1999) writes about the development of a social movement of people with Asberger’s syndrome (AS), a condition related to autism. This constituency of people whose impairment can undermine face-to-face interaction has the potential to be liberated by the Internet. An AS identity has developed, which is counterposed to the mainstream world of “neurotypicals” or NTs. Is this social group as similable within the broader disability movement? Singer suggests,
A challenge for the disability rights movement materializes: how do you include people who may need the benefits of inclusion, but cannot bear the physical and emotional presence of it? (P. 67)
Her conclusion is perhaps relevant to wider questions of disability identity and difference:
Perhaps as the voices of the “neurologically different” are heard more loudly, a more ecological view of society will emerge: one that is more relaxed about different styles of being, that will be content to let each individual find his/her own niche, based on the kinds of mutual recognition that can only arise through an ever-developing sociological, psychological and now neurological, self-awareness. (P. 67)
In this section, we will turn to an exploration of some mainstream concepts in political theory to begin to explore their relevance to the emerging politics of disability. Justice, citizenship, democracy, and rights are terms that are commonly deployed in the writings on disability politics. Oliver (1993), for example, points out that “to be disabled in Great Britain is to be denied the fundamental rights of citizenship to such an extent that most disabled people are denied their basic human rights” (p. 6). Yet is citizenship a robust concept? Can democracy deliver for minorities? Are civil rights the answer to the exclusion of disabled people? This section unpacks these concepts and situates them within disability politics.
Citizenship, as Ruth Lister (1997) in her monograph on the subject points out, is a contested subject. It is about both the relationship between individuals and the state and the relationships within a state between individuals. It incorporates notions of rights, responsibilities, obligations, needs, actions, virtues, and opinions. While approaches to citizenship include those of social liberalism, communitarianism, neoliberalism, and civic republicanism (Voet 1998), we will concentrate in this chapter on social-liberal and civic republic ideas.
Social liberalism is exemplified by the work of T. H. Marshall (1950), perhaps the most influential postwar writer on the subject. His notion of citizenship is contained within legal rights and legal obligations, and it is these concepts that lie at the heart of disability movement’s demand for civil rights legislation for disabled people. According to Marshall, citizenship can be broken down into three elements: civil, political, and social. The civil element refers to individual freedom, the political to a right to participate in the exercise of political power, and the social to a right to economic welfare and security and access to resources through which the norms prevailing in that society can be achieved (Marshall 1950:10-11).
Oliver (1996) has used Marshall’s (1950) tripartite formulation to argue that disabled people, in the United Kingdom at least, are denied full and active citizenship. He argues that disabled people are denied their full political rights, in that they are denied access to polling stations, information on which to base informed choices, and full inclusion in the political process. The underrepresentation of disabled people in the higher echelons of many of the political parties and at the higher levels of decision making throughout Europe and the rest of the world support these assertions. In addition, the glut of organizations for disabled people who speak on behalf of disabled people, as well as their relative wealth and subsequent power in comparison to organizations controlled by disabled people, further reduces disabled people’s political rights.
There is also much evidence to support the assertion that disabled people are denied basic social rights. For example, Charlton (1998) documents how disabled people are abandoned or hidden by their families and are not allowed to enter the mainstream of social life. Further inaccessible environments can prevent disabled people from working, socializing, and conducting fully public lives (Barnes 1991). Disabled people are also often subjected to second-rate segregated education, thus denying them future employment opportunities (Oliver and Barnes 1998). Disabled people are also denied basic civil rights. For example, when in work they are often paid at a considerably lower rate for the same job as nondisabled people (Hyde 1996). Again, disabled children and adults are also more likely to be physically and sexually assaulted than their nondisabled peers (Westcott 1993).
These facts about the status of disabled people as second-class citizens and the struggle for full citizenship have been at the forefront of recent political campaigns by organizations of disabled people worldwide (Charlton 1998; Dreidger 1989). Under the influence of the civil rights movement in the United States and liberationist social movements throughout the world, disabled people have organized to demand their full inclusion as citizens. We could cite, for example, the independent living movement and its success in procuring social rights for disabled people, enabling many disabled people to live outside of institutions, and in reevaluating the notion of independence. However, despite recent successes, such as the Americans with Disabilities Act in the United States, the Disability Discrimination Act in the United Kingdom, and similar legislation in Australia, Canada, New Zealand, and throughout the rest of the world, the status of disabled people as second-class citizens has yet to be resolved. Similar legislation has failed to achieve significant improvements in the lives of many women, black people, and gays and lesbians and has led many writers to question the validity of approaches to citizenship founded on the notion of social liberalism.
Social liberalism, it is argued, downplays notions of difference, promoting the idea of a universal, abstract, disembodied individual. Lister (1997) suggests that in actuality, the citizen in social-liberal accounts is not disembodied but is, in essence, one who is male, white, heterosexual, and nondisabled. She argues that it is the standpoint of the privileged and powerful that has become the norm, and others are seen as deviant and inferior. Differences between disabled and nondisabled people are socially produced for a reason—to maintain dominance. If oppressed groups challenge the ideas of the powerful, their challenges are ignored because they are seen as the rantings of biased, partial, and selfish special interest groups that wish to seek favor for their own particular grouping at the expense of the mainstream (Young 1990:116).
This deficiency in social liberalism has led to a school of feminist thought drawing on, among others, the ideas of Arendt (1958), Sennet (1977), and Barber (1984). Rather than concentrating on citizenship, this school of thought argues for a new democracy, one that is based on participation associated with a pursuit of the common good. This is termed civic republicanism. Citizenship is about active political participation, a process that incorporates the views of women and minority groups within the public sphere, enabling the confrontation of difference and promoting inclusion. It is argued that democracy, as it currently exists, lets down people from minority groups. So, Iris Marian Young (1990) writes,
To promote a politics of inclusion, then participatory democracy must promote the ideal of a heterogeneous public, in which persons stand forth with their differences acknowledged and respected though perhaps not completely understood by others. (P. 119)
Young proposes that the ideal of participatory democracy can be achieved through what she describes as a “politics of group assertion” through which oppressed groups of people identify a positive sense of difference (Young 1990:167). While these groups may primarily emerge around single issues, Young suggests that coalitions will emerge as the groups unite to fight for a just society. However, she argues that oppressed groups need separate organizations to allow “group members to determine their specific needs and interests” (Young 1990:167).
Her argument, when applied to disabled people, suggests that democracy will be enhanced and the position of disabled people strengthened within a society if disabled people are brought into the political system as an interest group and that, through this presence, their demands will be legitimized. It further requires people with impairment to self-identify as disabled and through such a process reject the diminishing or displacing identities that others may wish to place on them. The implication is that disabled people must reject a notion of sameness. Disability rights and citizenship are not achieved through a claim founded on their equality with nondisabled people but through a particularistic claim based on their difference. While Young (1990) does not reject the benefits of the former approach—arguing that such an analysis exposes the arbitrary nature of what are thought to be natural group-based distinctions, presenting a clear standard of equality and maximizing choice—she contends that a society without group-based distinctions is neither possible nor desirable (Young 1990:163-64). Disabled people are one of many socially and culturally differentiated groups, and if democracy is to be achieved, all these groups must respect and affirm one another. Justice will only be achieved if disabled people’s values are accorded the same worth as those of nondisabled people.
Yet perhaps Young’s (1990) perspective has to be situated in the U.S. context. Group-based identities and identity politics have long been part of the American tradition of political representation and have acted as a bedrock of individual and collective rights in that country. For example, the women’s movement, workers’ movements, and ethnic movements all started in the late nineteenth century and are linked to the ideals of individualism and democracy prevalent in American society. It is in this way that much of the American disability rights movement differs from that of Europe and the rest of the world. In Europe and elsewhere, the disabled people’s movement has challenged the state, the bureaucratization of society, capitalism, and consumerism and has aimed at social revolution. In America, in contrast, the aim has been less to challenge the legitimacy of such institutions but to demand that America live up to its ideals of equal rights for all individuals.
Another problem is that the difference approach demands that disabled people must self-identify as such, and, as we have already argued, many disabled people do not want to identify themselves as different. Indeed, disability politics has, in the past, tended to downplay notions of difference, seeing disability as a uniting factor based on social exclusion. There is a danger that if disabled people try to mobilize around an agenda driven by difference, then disabled people themselves will construct difference on the grounds of their different impairments, and the disabled people’s movement will become disaggregated and fragmented. There will be no disabled people left. Furthermore, how can a politics of diversity exist alongside the necessary politics of solidarity without the need for solidarity appropriating diversity in the name of the common good? There is also the danger that calls for difference can lead to an essentializing of the category. That is, having to identify as disabled and different, differences can be perceived as naturally given.
Finally, further questions are raised about the stress placed on “independence” and “autonomy” as a goal. These ideals have to be understood in the context of the Enlightenment tradition of the individual liberal subject. Many people have criticized this idea as being a male-dominated perspective, which ignores the ways in which individuals are dependent on others. Carol Gilligan (1983) suggested that in addition to abstract political concepts such as rights and justice, there was an alternative set of ideals based on solidarity and care and relationships, which were not inferior but different. The feminist ethic of care philosophers such as Jean Tronto (1993) and Selma Sevenhuijsen (1998) offer an important correlative to the rhetoric of the independent living movement. For example, Sevenhuijsen criticizes autonomy and independence as a goal and the whole idea of “atomistic individualism”:
The ideal of abstract autonomy in fact overlooks what it is that makes care an element of the human condition, i.e. the recognition that all people are vulnerable, dependent and finite, and that we all have to find ways of dealing with this in our daily existence and in the values which guide our individual and collective behaviour. (P. 28)
Because women have historically been the care providers, it is suggested that they are less likely to promote an unrealistic view of independence. They realize that a large proportion of people—babies and children, pregnant women, older people, and sick and disabled people—will rely on others in various ways and at various stages. Thus, Sevenhuijsen (1998) promotes the idea of “caring solidarity”:
The feminist ethic of care points to forms of solidarity in which there is room for difference, and in which we find out what people in particular situations need in order for them to live with dignity. People must be able to count on solidarity because vulnerability and dependency, as we know, are a part of human existence; we need each other’s disinterested support at expected and unexpected moments. (P. 147)
This notion of caring solidarity may perhaps offer some promise in trying to break down the dichotomy between disabled and nondisabled people, recognizing that everyone is variously dependent and that aspiring to independence reinforces rather than resolves a historic problem.
This brief discussion suggests that disabled people cannot necessarily just seek admission to existing political structures or draw on traditional political concepts. While at a rhetorical level, notions such as civil rights, democracy, and citizenship are powerful slogans, more complex responses are demanded to do justice to the complexities of the politics of disability. It may be that some of these responses challenge core assumptions within political theory itself.
What makes the disability rights movement subversive is paradoxically the extraordinary worldwide oppression of people with disabilities. The oppression is systematic. The principles, demands and goals of the disability rights movement cannot be accomodated by the present world system. (Charlton 1998:149)
In concluding this overview of disability politics, we want to raise two final questions, which in different ways are about the impact and ambitions of the disability movement. The first, raised by James Charlton’s (1998) statement, is the extent to which disability politics is about reform or revolution. The discussion of political theory demonstrated that it is difficult to see the liberation of disabled people being delivered within existing structures or via mainstream concepts such as democracy and citizenship. Many commentators would see the liberal ambition of civil rights as being fundamentally doomed because of the broader systems of power and the underlying capitalist social relations. As the global market becomes more and more dominant, the scope for national-level social investment and egalitarian reform becomes more limited. Yet, equally, despite the revolutionary rhetoric of Charlton or Oliver (1990, 1996), global social transformation is not on the agenda either. It may be that the true empowerment of disabled people will only come about through a replacement of the dominant political and economic structures of the planet, but this does not seem an immediate or even medium-term possibility.
The second question is about the progress that has been achieved so far and about the extent to which the disability movement can take credit for this. We want to argue that, despite much of the hype, the impact of the disability movement may have been as much in personal and symbolic terms than in instrumental or structural terms. While thousands of people have developed positive senses of themselves through access to a political identity and, in the process, relationships between disabled and nondisabled people, and service users and professionals have undoubtedly begun to change, the broader political developments have not been fundamentally driven by disability activism. We are making a similar point to those who argue that the change in the social role of women in the postwar period has owed more to the changing requirements of capital and less to the militancy of the feminist movement. However, we add that the success or otherwise of disability politics is a factor of the broader political landscape, not the leverage of disabled people themselves.
Several examples may help substantiate our claim. In Australia, disabled protest and the growth of self-organized groups proceeded well during the period of Labour government. A Disability Discrimination Act was passed, which emulated the civil rights pattern of the United States and other countries, albeit as a gift of government, rather than as a concession to the movement. Yet, with change of government, the tide has flowed the other way. Organizations have been defunded, and now there is no DPI national affiliate structure in Australia. Activist groups are falling apart, and funding is only available for mono-impairment and consumer-type groups (Meekosha and Jakubowicz forthcoming).
Devolution or other political change may dilute commitment to equality and participation, as evidenced by the devolution of welfare funding from the federal to state level in the United States. This is also evident in the devolution of disability services from the federal to state level in Australia (Cooper 1999), as well as in Shakespeare’s (1996) study of the impact of local government reorganization on disability groups in the United Kingdom. In the latter case, for example, disabled people’s self-organization in the county of Avon developed very effectively through the 1980s. The presence of a core of disabled officers in the local authority, together with grassroots lobbying, led to funding for self-organized groups, the setting up of a center of integrated living, and other advances. This was enabled partly because no one political group had overall control of local government, and therefore considerable negotiation and strategy were involved in day-to-day running of Avon politics. Astute disabled advocates were able to play off different political parties, all of whom were concerned to be seen as supporting disabled people and therefore would promise funding and influence.
Two macro-political changes resulted in a different landscape. First, the advent of community care meant that local government grants were converted into contracts for services. In this climate, the Centre for Integrated Living flourished, but the Coalition of Disabled People withered because community development was a low priority. Second, local government reorganization meant that Avon was split into four unitary authorities. Disabled officers were divided among the different successor bodies, removing the strong core of allies within local council structures. Experience and expertise in equalities work were lost. Several of the new authorities had no interest in or understanding of disability. One authority supported a local consumer network of service users, rather than the political organization of disabled people. Bristol Council, now totally controlled by Labour, no longer needed to deliver benefits to disability groups to operate, and disabled voices were squeezed out of decision making, all of which now happens behind closed doors in the private meetings of the ruling group, rather than in open council debate.
What this suggests is that the tide of political success can flow both ways. In a democratic system, the party in control of government will dictate the role of disabled political groups and the policy toward disabled people. In general, parties of the left will favor intervention and action on equality; in general, parties of the right will favor cutting back state spending and leaving social outcomes to market forces. As well as ideology, the structures of local government are important. Higher-level authorities, serving a bigger population, are more likely to precipitate a critical mass of activists to mobilize for change. When no party is in overall control of a local or national government, disabled and other minority groups will be able to exert leverage. When there is a strongly dominant group, there is less need for leadership to take account of disabled constituencies.
These concluding comments are intended to highlight the importance of realpolitik, as opposed to idealism and rhetoric. Disability politics is a continuing project and will involve reversals as well as successes. There is no doubt that disabled people remain among the poorest of the poor, and this fundamental imperative makes disability a key item on the twenty-first-century political agenda. At the outset, we discussed the approaches of Fraser (1989) and Charlton (1998) and also proposed our own three-part typology of disability politics. Here we want to conclude by arguing that Fraser’s first two stages of political reform have largely, but not entirely, been achieved. Disability is recognized as a political issue, and the mechanisms for achieving the liberation of disabled people as a minority group have been identified. There continues to be dispute over the extent to which this need has been satisfied, and there is evidence that some gains are vulnerable to reversal, given a change of government or a decline in national or global economic well-being. There has also been change in each of Charlton’s three areas of political activity. The disability label has been increasingly seen in political and social, not medical terms, particularly in the Western world. The equation of disability with medical tragedy is very powerful and is by far from entirely displaced, but there is growing consciousness of the role of social forces in disabling people with impairment. It may be that the advent of genetic solutions to human problems goes some way to reversing this and reestablishing the connection of the disability experience to the impaired body. However, it would not be true to say that the social model of disability has been widely adopted. It is far more common, internationally, for disability to be conceived of as the outcome of social and bodily processes than it is for disability to be defined narrowly as social processes alone.
The development of disability as identity politics has been important in instrumental terms because it has led to campaigns for independent living and civil rights, which have made a material difference to the lives of millions of disabled people. Yet it has also been important in symbolic terms because it has redefined the meaning of disability for individuals and for societies. Disabled people do not have to identify in terms of impairment and deficit but can identify in terms of social oppression, resistance, solidarity, and pride. This conscienticization—or awareness of the role of social forces in disabling people—leads to renewed demands for change and political reform.
Here the work of Axel Honneth (1995) may be useful. He argues that it is important to reconcile the individual as well as the collective dimension of political struggles. Drawing on Mead and Hegel, he looks at the needs for recognition and self-respect, which impel minority communities to mobilize for change. Part of the effect of civil rights and citizenship is to enable individuals to have self-respect, knowing that they are valued and respected as equal citizens before the law. It is on the basis of this self-respect that rights can be won and lives changed. Therefore, we conclude that while there may be reversals in particular countries and certain battles may be lost, the course of politics is flowing inexorably and irreversibly toward a changed consciousness by disabled people and of disabled people. It is easy to look at Charlton’s (1998) third area—the macro-political stage—and ignore the changed identities of disabled people and the changed relationships between disabled people and nondisabled people. The struggle for full equality and justice is hardly begun globally, but many people have begun to realize that they have a right to demand equality and justice and that they are worthy of equality and justice. A conservative might concur with Thomas Carlyle:
To reform a world, to reform a nation, no wise man will undertake; and all but the most foolish of men know that the only true, though a far slower, revolution is that which each begins and perfects on himself.
Alternatively, we ourselves endorse the comment of Nelson Mandela, who said, “Those who are ready to join hands can overcome the greatest challenges.”