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Don't have an account? Sign in via your Institution Sign in. Purchase Subscription prices and ordering Short-term Access To purchase short term access, please sign in to your Oxford Academic account above. This article is also available for rental through DeepDyve. View Metrics. Email alerts New issue alert. Advance article alerts.

Article activity alert. Receive exclusive offers and updates from Oxford Academic. Related articles in Google Scholar. Citing articles via Google Scholar. Account Options Log Masuk. Pustaka saya Bantuan Carian Buku Terperinci. Lihat eBook. Revitalising Communities in a Globalising World. In that country, all sorts of disabilities are highly stigmatised and people with disabilities are often hidden at home. Deng Pufang's disability was admired rather than despised. He started to carry a 'heroic body' when he attempted suicide by throwing himself out of a window in when Maoist activists occupied Beijing University.

Deng Pufang happened to be a student there, and after he had been interrogated, tortured and signed a full self-criticism of himself as the son of the liberal Deng Xiaoping, he injured himself Kohrman, Thus, disability did not ascribe him the status of a victim, but rather, his paralysed body came to manifest his 'heroism'. His body became politicised as the heroic symbol of the liberals against the Cultural Revolution of and helped him to establish the first China Disabled Person's Welfare Fund in Nevertheless, that his disability acquired the status of a heroic body remained a 'famous exception'.

It neither broadened the idea of what constituted normality for disabled people, nor extended civil rights for disabled people, except for some contained within the individual-based medical model of rehabilitation. Very little is known about enormous efforts of people with disabilities who have fought for their rights in Eastern Europe during the s and s. Yet, such resistance existed. In for instance a group of physically impaired men established the 'Action group' for the protection of the rights of disabled people in Soviet Union which was soon ostracised as a movement of "political opponents" Dunn and Dunn They were silenced and forced by state welfare institutions to become dependent recipients of care, in spite of their efforts to become economically independent and creative.

While the "invalids of war" became the privileged welfare subjects who consumed a lot of state money, other people with disabilities were seen as less deserved welfare recipients and got less social benefits. After the end of the Communist regime in the Soviet Union, the hierarchy of the welfare subjects also changed. War veterans no longer obtained the higher benefits and so their experience of poverty is now closer to that of other people with disabilities. In Russia today, disabled veterans of WW II live in extreme poverty regardless of the numerous social benefits and symbolic privileges that they had attained under the Communist regime.

For example, when comparing their ration of food with those of prisoners in , Dunn found that the latter ate better than disabled veterans, who could not afford to buy meat and milk. In Slovenia, another hierarchy can be observed between the socalled 'invalid organisations' and the new disability activists' organisations. The former were set up and financed by the socialist state but still today retain their privileged position and claim that people with disabilities should continue to be called 'invalids' invalidi , and be 'cared for' by state institutions.


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Disability activists who had established organisations in opposition to the 'invalid' ones during the s have been challenging the 'invalid' identity with its passive recipient connotations and demanded a new terminology that would be less stigmatising while advocating for welfare system reforms. In , Slovene invalid organisations succeeded in amending the Constitution to name 'invalidity' as a human condition that should not be the cause of discrimination. In doing so, they opened a larger debate on citizenship rights for disabled people and the questioning of a welfare regime that prioritises dependent care instead of independent living.

Disability activists interpreted the motivation of invalid organisations in debates about constitutional change as being interested in maintaining the status quo and affirming their own influence because they wanted to retain both the terminology describing disabilities and the practices associated with it. Despite disability activists' protests, Article 14 of the Constitution was passed in the terms proposed by invalid organisations.

This clause guarantees equal human rights to all citizens, 'regardless of nationality, race, gender, language, religion, political and other beliefs, economic status, birth, education, social status, invalidity, or any other personal circumstance' Constitution of the Republic of Slovenia , Article Although constitutions themselves do not guarantee actual equality in every day life, legislative changes are highly relevant especially in societies with a strong normative knowledge which categorises people according to inabilities and impairment itself.

The constitutional change in Slovenia serves as an example of what so often happens to minority groups in post-socialist countries when they gain some formal rights but have not yet fully acquired grounds for equal treatment and citizenship status. The resistance against changing the name ' invalid' into a less stigmatising word prolongs the disablement of disabled people from the times of state socialism to the present neo-liberal governance and shows the common un conscious intention of the new neo-liberal political elites influenced by the old post-socialist lobbies, that nothing shall be changed for the enlargement of the rights of minority people in everyday life.

As I emphasise above, the political and social processes of transition after have been dominated by neo-liberal market rules and neo-liberal social values which have in fact only emphasised the already existent attitudes towards people with disabilities. At present, the terms 'persons with disabilities' and 'person with intellectual disabilities' are not used in any of the relevant legislation in Eastern European countries. They still use terms such as 'invalid' and for people with intellectual disabilities there exist many different labels within the same country. These include 'mentally retarded persons' in Bulgaria; 'persons with special needs' in Slovenia; 'people with altered working capacity' in Hungary; 'person with mental disabilities' in Lithuania, Estonia and Bulgaria; 'mentally handicapped' in Romania; 'persons with disturbance in mental development' in Slovenia; and 'persons with physical and mental disorder' in Croatia.

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One feature characterising the post period is the considerable arbitrariness and fluidity of disability diagnoses and labels which depend on welfare regimes, value systems, political constellations and individual struggles. Medical diagnoses that pretend to be objective and value-free are fluid and dependant on different social factors.

They are not only medical, but also political categories which influence to a large extent, a person's rights and citizenship status. In many East European countries, for example, Russia, the number of people with physical impairments has been increased tenfold in response to individual and state strategies aimed at removing working people over 50 years old from the labour market in response to neo-liberal dictats cf Smirnova Iarskaia, At the same time, new ideologies about 'integration' in Slovenia have considerably reduced the number of children with intellectual disabilities, a move that highlights the arbitrariness of medical and behavioural labels.

Thus, during the period to , the number of children with intellectual disabilities decreased dramatically - almost by half Rights of People with Intellectual Disabilities in Slovenia , while the number of children with physical disabilities remained more or less unchanged. One of the important factors behind this decline have been conceptual changes including a heightened understanding of the impact that the label 'intellectual disability' has on a person's life and citizenship status.

While the welfare regime of the state socialist period emphasised 'protection' and 'life long care by a state institution', the new neoliberal welfare regime shows a slight shift towards concepts like rights, self-determination, participation and inclusion. This has been reflected in a new professional awareness of the lifelong stigmatisation of children identified as having an intellectual disability.

Most of these children are diagnosed with borderline or mild intellectual disabilities, ensuring that these two labels represent a very heterogeneous group of children. Many of them experience multiple forms of social deprivation including economic vulnerability, emotional disadvantage, violence, abuse and ethnic discrimination - especially if they are Roma children. Experts rationalise this medicalisation of ethnicity by claiming that categorisation is a result of the Roma children's poor knowledge of the national Slovenian language, their external appearance and their family's socio-economic background.

In other east European countries, similar processes are evident. In , at the initiative of the European Parliament Special Rapporteur for Romania, Baroness Emma Nicholson, some 38, children who attended special schools were reassessed according to the usual assessment procedures. Approximately half of these children were assessed as being capable of performing to mainstream educational standards, and were reassigned to mainstream schools Rights of People with Intellectual Disabilities Romania , , indicating how arbitrary these labels are.

Alongside these shifts in the labelling of disabled people is the increasing gap between the formal and actual citizenship rights of disabled people in post-communist countries in east Europe. The everyday and symbolic hierarchies of disability place people with intellectual disabilities at the bottom and define them as incapable of work. The Act defines disability status for those people above the age of 18 who are diagnosed with moderate, severe and profound intellectual disabilities and confers on them the status of 'invalids' and entitles them to various types of care. Covering 7, people in , it provides the grounds for daily, part-time or residential care in an institution or with a foster family and guarantees some financial support such as the disability allowance and assistance allowance.

Under this law, they are considered unable to ever live independently and are incapable of work and can only be placed on training programmes and in sheltered workplaces. Similarly, in , Soviet legislation introduced monthly state payments for children with disabilities under the age of 16 Azarova, This benefit was transformed into a social pension in through the Law of 20 November On State Pensions in the Russian Federation cited in Azarova, This development shows a similar attitude of long-term invalidisation of a person once labelled as disabled.

In spite of numerous legislative changes within the system of social welfare, the area of children and adults with intellectual disabilities has not changed much. Like in Slovenia, the Russian Federation continues to uphold legislation passed during the s, thus continuing the inappropriate labelling of disabled people, as occurred through the On Measures for the Further Improvement of Conditions for Disabled and Handicapped Children of 27 March Azarova, This formally gave several opportunities of protected and inclusionary employment schemes to disabled people.

In practice, the law had not been implemented by the end of and it continues to exclude all those people who had already been automatically excluded as unable to work and live independently according to the law of considered above.


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  • Another example of the gap between formal rights and everyday practice are processes of deinstutionalisation which were ensured according to the National Plan of Social Security and set in force by the Ministry of Labour, Family and Social Affairs in the Republic of Slovenia in Despite this document, the majority of people with disabilities still live in large institutions where the average length of stay is from eight to ten years, which is indicative of the endemic long-term institutionalisation and segregation Flaker et al.

    Although the cost of institutional care is much higher than community-based care, the government actually encourages institutionalisation by ensuring free institutional care for children and young people. In cases where the child remains at home, however, the carer receives minimal support. The nursing allowance should cover the additional costs of care, but ignores the full-time caring work done mainly by women members of the family. Adults in residential care pay part of the costs from their own resources such as benefits or pensions or the resources of their parents or other relatives, while the municipality in their permanent place of residence covers the remainder of the costs.

    In spite of the formal deinstitutionalisation principles, individuals who do not live in residential care cannot use the amount of money set aside for monthly institutional care for personal assistance at home because the Slovene legislation does not allow for individual funding. Another paradox regarding the formal and the actual rights of people with disabilities is the issue of schooling for children labelled as intellectually disabled.

    During the preschool period, Slovenian children defined as having disabilities are assessed by a Placement Commission and assigned a category of intellectual disability. The Placement Commission also decides in which school programme the child will be placed. Slovenia does not have a special law on integration, but some new laws that promote more inclusionary principles, for example, the Primary Schools Acts from and the Placement of Children with Special Needs Acts from Rights of People with Intellectual Disabilities in Slovenia , A growing tendency towards integration can be observed amongst certain categories of children with special needs.

    Children with physical and sensory impairments are increasingly integrated into the mainstream school system. Children with other intellectual disabilities, e. In addition, only children with mild intellectual disability can be enrolled in special schools while all other children have to go to school in residential homes. So, despite these new laws, children with intellectual disabilities remain almost entirely excluded from processes of social integration in Slovenia.

    Something similar can be observed in neighbouring Croatia which promotes inclusion in some government documents while at the same time, the law on mainstreaming covers only children with mild intellectual disabilities.

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    Children given other more severe diagnoses are contained within separate segregated schools Rights of People with Intellectual Disabilities in Croatia , The opposite of what happens in these two countries occurs in Estonia where there has been a large increase in the number of children with special needs - the label that includes children with different impairments, in mainstream schools. From to , approximately 25 percent of all children in primary education are children with special needs. Although the number sounds very promising, it is important to notice another division, which is that the majority of children out of that 25 percent were integrated in special classes in the framework of mainstream schools, and only 7 percent were in fact placed in mainstream classes outright Rights of People with Intellectual Disabilities in Estonia , In Slovenia, a paradox between formal and actual citizenship rights is also evident in the area of guardianship.

    On the level of formal rights, people with disabilities can get back their removed full capacity rights.