Douwe van Houten
University for Humanistics, NLD
In the social sciences in general, as well as in organization studies in particular, disability is not often recognized as an issue. Almost nobody knows that in most societies the percentage of disabled persons is between 10 and 15 percent, according to the WHO, whose is not a soft definition. Life with a disability is a very complex matter and in many respects society is not organized in such a way that this complexity can be easily handled. In consequence, many disabled persons have been marginalized, in some countries more than in others. It is noteworthy that in the well-developed Dutch welfare state marginalization seems to be the rule. Welfare and care provision is relatively good, but the possibilities for social participation are few and far between. Compared to the United States, segregation is more common in the Netherlands than is integration. There exists, in effect, a social division between first- and second-class citizens.
In this article some mechanisms behind this division are explored. In a sense, the Dutch welfare state can be seen as a “constructed society” with a complicated form of structuration. For disabled persons there is little room for coherence. Daily life is a very complex business wherein one is confronted with complicated facilities and rules. Disability management is an organizational challenge for the individual. The alternative for the “constructed society” is the “varied society,” where the principle of equality is combined with that of diversity. Such a society is complex rather than complicated (Lissack & Roos, 1999). It demands the deconstruction and rearrangement of welfare and care provision, to arrive at customized care and support.
In a constructed society such as that of the Dutch welfare state, policy classifications play an important role. In the constructed society, the individual's personal life is deconstructed and organized anew according to the legislation of the welfare state provision. The “person” is transformed, to fit into the “question-and-answer” procedures of officialdom. From the unemployed, the officials have to know:
and so on. Work, school, health, household, and money are the relevant categories. The answers are registered on standard forms to determine to what welfare entitlements a person is entitled. Provision is differentiated in terms of financial support, professional help, supplementary education, and the like. This is a complicated process by which the person is reduced to welfare dependency categories. The system determines “what is the case” not in terms of someone's personal life, but in terms of the welfare system. For the welfare bureaucracy, the rest of the person's biography is unimportant or irrelevant (Leonard, 1997).
Becoming a welfare recipient implies entering the world of second-class citizenship. First-class citizens have a job and are healthy. In this respect it is justified to speak about social division in the Netherlands. This division is obscured and people on the wrong side of the line will mostly not come out and make their “condition” known. This is partly because the “dis-abled” are hidden, elderly citizens, children, and students not being taken into account. I am concentrating on citizens between 16 and 64 years of age, excluding (university) students. The total population of the Netherlands is almost sixteen million, of which about ten million belongs to the 16-64 age category. Almost six million are in the labor market, so some four million are not. Although labor participation of women in the Netherlands has been increasing rapidly during the last ten years, at least two and quarter million women do not have a job. If they are married and their husband has a job, they most likely will not be registered as unemployed. Some 1,700,000 people have an impairment or suffer a chronic illness; many of them are unable to work or are labeled “unable to work.”
What sort of citizenship does this group of disabled people enjoy? In the theories on citizenship, liberal, social democrat, and humanist visions can be distinguished. Liberal citizenship refers to the public sphere or, more specifically, to the republican notion that to govern and to be governed are parallel. Social democratic citizenship departs from the notion of social participation, that is, of nondiscrimination. T. H. Marshall called this “full membership of society.” In his theory, civil and political rights are complemented by social rights, which have to do with social inclusion. Humanist citizenship starts with the principle that everyone must be respected, irrespective of specific characteristics such as health, employment, race, gender, age, and so on. Everyone is worthwhile. In a sense, this can be seen as an ethical-deepening specification of social democratic citizenship. Humanist citizenship includes the republican notion of political participation, but humanist citizenship is much broader. It is founded on the combination of equality and diversity principles (Lister, 1997). All people are equal and diverse, at the same time; and both principles must be respected. As Ann Phoenix has suggested, this can imply that “we are all marginal now” (Phoenix, 1998). In this article, I am referring to the notion of humanist citizenship.
The mechanisms of welfare state bureaucracy, however, set disabled people apart. Professionals determine the care and support they supposedly need (Morris, 1993; Oliver, 1996). To achieve this task, a very complicated professional bureaucracy has been built up, which is characterized by high levels of specialization, especially in healthcare. But the disabled are patients and not citizens and “patientship” and “citizenship” are opposing principles, for instance in terms of (in)dependency. Being defined as disabled by the welfare bureaucracy, and thus by society, means living in a disabling environment. It implies that if you are disabled, you are not a full member of society or an active citizen. Furthermore, much welfare and care provision is residential; that is, it takes place outside of normal social life.
The possibilities for social participation of disabled persons vary from moderate to extremely lacking. Seen from the perspective of T. H. Marshall's theory of citizenship, there is something very wrong with the European welfare state (Lister, 1997; Marshall, 1949) For Marshall, modern citizenship implies social rights as well as civil and political rights. Social rights refer to full membership of society, especially for those who are vulnerable. In Marshall's theory, social rights are at the core of the welfare state. Exclusion must be prevented. A welfare state has to guarantee inclusive citizenship.
The Dutch welfare state is organized in such a way that if you are confronted with serious impairment or chronic illness, you will (probably) be marginalized. In the Netherlands two standards are important for full citizenship: you must have a job; and you must be healthy. Thus, disabled persons have at least two problems. In addition, they are regarded as “patients” and all provision is directed to them in that role. It is difficult to get support or financial resources for social participation, that is, to work as a volunteer, or to take part in sport, or to be able to go to concerts, etc. If you cannot walk, you have a mobility problem; most buildings are not accessible. The urban environment is organized in such a way that workplace, school, public transport, and the like only permit the disabled person to participate partially (Oliver, 1996).
In fact, Dutch society amounts to a regime of discrimination. In the Netherlands we do not have a “Dutch People with Disabilities Act,” as in the USA (1990). Disabled persons do not have the right not to be discriminated against. There is a social division in citizenship, in which disabled persons are oppressed. Although patients are highly organized, and about 90 organizations with 300,000 members work together on a national level to protect their interests, the exclusion is inherent in their identity as “patient.” Thus, the disabled are not really powerless, but they remain “organized” in terms of their “patientship” and not their citizenship.
The concept of disability management has been developed by Conny Bellemakers. It is based on the insight and experience that disabled persons have to manage their daily life by themselves and not leave it to professionals.
For disabled persons, daily life is very complex. They have to connect many different institutions and regulations and most of these do not fit in with their personal lives. But they remain dependent on these institutions, and this complicates their existence. We live in a world that is organized for “standard persons” and as “disabled” it is not your world. In daily life, the disabled have to manage many complicated relationships. You may need a special house; you may need to organize homecare and community support. Your mobility may have to be planned. You will have to find out ahead of time whether or not where you want to go is accessible for you. You will have to organize assistance in your daily life. You will have to arrange financial support for many things. You will have to run a sort of “administrative office” to record all the special expenditures linked to your personal (welfare) budget.
In such a context, coherence is problematic. You are split up, in analytical bits, according to various policy classifications. One part has to do with health and medical care, one with housing, one with transport, one with income, one with social support, and so on. And each is a different regime with its own logic and conventions. If you strive for purposive action, to arrange your own life, you will have to be very creative. And you have to operate in an disabling environment in which you have a negative image. Disablement is linked to prejudice; your life is often not understood as worthwhile (Morris, 1991).
The myriad of arrangements you have to make all occur in the interface between your own life-world and the world of the care and welfare systems. I am not speaking here about the organization of healthcare systems, however important this is, but about biographical arrangements, including professional support, social support, financial support, self-esteem, empowerment, networking, and the like. All of these entangle you in your disability or impairment. You lose your status as citizen. Self-disability management implies the maintenance of one's entitlement as a citizen wherein one is not reduced to care and welfare dependency. At issue is how to remain proud of yourself and not become sucked into an emergent disability regime, in which there is no real place for your life because you do not meet the criteria for “normality” (Morris, 1991, 1993; Oliver, 1996; see also Lister, 1997).
Self-disability management has to do with managing diversity. Diversity is understood as a positive value. Self-disability management has to do with demanding acceptance from society for the person as she/he is—acceptance for you as you are and not as society thinks you ought to be. It encompasses the right to be different. This requires a tailor-made approach to disability, based on the deconstruction of the welfare regime. In terms of bureaucracy this means the declassification of the individual. Such an approach requires an “open (social) space” wherein one can discover what works (Gherardi, 1995). But in the constructed society, such open space is not available. Current practice works with protocols and fixed formats. My critique is of the organizational requirements that determine how the individual has to “do disability.” Currently, the system blames the victims if they do not fit into the standard world of the welfare state.
The performative practices of welfare professionals, and of society as a whole, marginalize and discriminate against disabled persons. The same pattern applies to persons who are unemployed for a long time, persons with very few skills, ethnic foreigners, (ex)-psychiatric patients, the homeless, the drug addicted, ex-delinquents and the care-dependent elderly. This is a varied collection of marginals, three to four million of them in the Netherlands. That means that 20 to 25 percent of the population is “marginal.” About half of these are categorized as physically, mentally, or psychiatrically disabled.
Can society rearrange itself so that these persons are taken seriously, as full citizens? We are confronted, in our daily lives, with the image of normality—that is, with the idea of the “standard citizen.” Diversity in combination with equality demands to be re-examined and re-evaluated. All people are equal and different. “Equality versus difference” is an erroneous duality: a feminist argument (Lister, 1997; Morris, 1993; Phoenix, 1998). The logic of “difference” means demanding acceptance for what you are, on your own terms and not according to a standard image. It defines a political program for disabled persons that demands their recognition as worthwhile citizens.
In a varied society each person is respected, irrespective of impairment, chronic illness, race, gender, unemployment, age, and so on. It is a society in which each person has the right to a decent life, without having marginalizing and discriminatory policy procedures inflicted on them. In relationship to current practice, this is a deconstructed society wherein the negative images of disabled persons have been turned around and disability has been reshaped. In such a varied society, we would all in some sense be marginal, including nondisabled persons (Phoenix, 1998).
A varied society is much more complex than the constructed society in which we now live. Above all, a constructed society is complicated because of the splitting up of daily life into different spheres. Once split analytically, life gets handled in “independent” portions. In a varied society, interconnectedness is foremost. The reasoning of the varied society begins with the biography of the person, and not with welfare and care procedures. The introduction of a varied society would necessitate the reconstruction of the complicated welfare and care structures into some form of complex, interrelated, and flexible, person-oriented provision. This would restore and maintain active citizenship.
Customized care and support are required wherein social arrangements, such as community and family (or informal) care, state provision, and the commercial sector, are brought together to facilitate welfare pluralism. This poses an organizational challenge to the logic of welfare. Taking as one's point of departure the client-citizen who is in need of support reverses the normal logic. Compared with actual welfare state provision and healthcare, I am calling for a partial de-institutionalization of healthcare and de-residentialization. As far as possible, care and support must be given in society and, by preference, by society. This means a turnaround when compared with the dominant trends in the field of care and welfare during the last decades. The recent past has been characterized by institutionalization, professionalization, specialization, separation, classification, scale expansion, and the like.
In the varied society, care and welfare would be partly organized on the local, partly on the regional, and partly on the national level—with some regulation (in Europe) by the European Union. Designing personal arrangements starts in the local community. It needs to be supplemented by professional support from local care and health institutions, and this will be supplemented by more specialized professional support from the regional level. Social security is a national or even a European matter, but by preference the implementation needs to be local. Especially for disabled persons, interconnectedness with supporting organizational networks is very important. Networks of support prevent the “person” being split up into so many different subproblems, each with its own intervention strategy. The current danger is that everyone neglects what the other professionals do. In the varied society, supply-based organizational structures will have been deconstructed and transformed into multifunctional, community-related units in which integrative management is decisive (Morrow & Hawxhurst, 1998).
The problem of the marginalization of disabled persons in the Dutch welfare state is linked to the way the welfare state is organized. The solution is to be found in deconstructing it into a varied society. Is that realistic? I think it is. Some developments are already happening in this direction and one can work to empower the forces behind them (Shakespeare, 1993). However, there are other developments in opposite directions— driven by powerful stakeholders and self-interest. I cannot predict what the outcome will be. But I am a “constructivist”—citizenship has to be constructed as a shared idea, it will not come about as a mere product of (social) forecasts. The varied society has to be built.
In this article the varied society is merely a complexity narrative, but I hope that by telling this narrative it will come to be. My experience with such storytelling is encouraging. I hope you join me in the narrative.
This article is based on a paper presented to the annual colloquium Managing the Complex, Boston, May 31-June 4, 2000.
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