Disability policies,transnationalism and policy diffusion: ‘Asocial’ models of inclusion for children and youth in low and middle-income countries (LMICs)

Abstract

This paper examines the advances made by low- and middle-income countries (LMICs) in the inclusion of children with disabilities and youth within mainstream policies on education, employment, health, and social care provisions and the implications on their outcomes. Theoretically, this paper advances critical disability studies and addresses stigma and discrimination as barriers to progressive social policies. It also critically examines the diffusion of the social model of disability, which finds expression in the Convention on the Rights of Persons with Disabilities (CRPD). Methodologically, this paper uses latent class analysis (LCA) to analyse clusters of LMICs, regarding the adoption of social-legal provisions as stipulated by the CRPD. Finally, the paper concludes with a paradigm shift within the sociology of disability towards a sociology of enablement within the fold of emancipatory politics that addresses stigma and discrimination.

Keywords

disability medical social welfare and transnationalism

Introduction

The United Nations Sustainable Development Goals (2015) (SDGs) address the goals of education, health and equality and mark a significant advancement in disabilities and development. Their forerunner, the Millennium Development Goals (MDGs) that culminated in 2015, excluded goals related to people with disabilities (PWDs); as a result, disability did not figure in the funding priorities of donor agencies and nation-states. The 2030 Sustainable Development Agenda has explicitly recognised the capabilities of PWDs. Regarding children and youth with disabilities, some critical SDGs include education, employment, and health to advance the development process. Seven of the 169 targets identified in the 17 SDGs are referred to PWDs. These targets include access to poverty alleviation programs, general social protection, inclusive education with accessible language and communication, assistive technology, and equal employment opportunities. In its articulation of the SDGs the UN estimates that 93 to 150 million children live with disabilities. Currently, children with disabilities are the most excluded in society; an estimated 90% of children with disabilities in the developing world do not attend school. Disabled students are more likely to drop out of elementary schools and never reach higher secondary and tertiary education (Sustainable Development Knowledge Platform, 2015).

This paper aims to examine the advances made by countries on The Convention on the Rights of Persons with Disabilities (CRPD) provisions. It achieves its aims at two levels: theoretical and empirical. Theoretically, it advances critical disability studies and questions the divide between medical and social models of disability. It draws on the traditions of critical disability studies, which seek a departure from modernist notions of the human body towards a more emancipatory understanding of the disabled body. Methodologically, it conducts an empirical legal analysis to understand the patterns of provisions in disability policies in Low- and Middle-Income Countries (LMICs) from comparative perspectives. It analyses 11 dimensions based on the social model of CRPD. The CRPD and its Optional Protocol were adopted on December 13, 2006, at the United Nations Headquarters in New York. Signatures were opened on March 30, 2007, and the Convention came into force on May 3, 2008. It has the highest number of signatories, with 82 countries and 44 signatories to the optional protocol and one convention ratification (Department of Economic and Social Affairs Division for Inclusive Social Development, 2006–2016). This paper is organised into three sections: First, it examines the theoretical developments in understanding disability and reviews the international policy developments regarding children and youth and paradigm shifts in policy discourse. Second, empirical legal analysis has been conducted using latent class analysis (LCA) to identify clusters of countries in terms of advances made by them on CRPD. Finally, the paper concludes that while several countries have ratified the CRPD few countries have provided additional financial resources. However, with stigma and discrimination deeply entrenched in society, the advances towards inclusive policies for the disabled remain poorly developed.

Structural determinants of disability in LMICs: multi-sectoral welfare response

The understanding of disability has improved in health and legal domains in the last two decades. In health domains, the International Classification of Functioning, Disability, and Health (ICF) publication by the World Health Organisation (WHO) (2001:3) defined disability as

an umbrella term for impairments, activity limitations, and participation restrictions. Disability is the interaction between individuals with health conditions (e.g., cerebral palsy, Down syndrome, and depression) and environmental factors (e.g., negative attitudes, inaccessible transportation and public buildings, and limited social support) (World Health Organisation, 2001).

More extensive conceptual shifts within disability are primarily due to the growing recognition of social stigma and discrimination that PWDs face. PWDs have diverse care needs, ranging from extensive all-around care to minimal assistance. Additionally, care in the form of interventions could differ from medical to social support. Since health care caters to people without disabilities, PWDs are more likely to encounter providers without adequate expertise and skills, more likely to be denied health care, and more likely to be discriminated against. Affordability further hampers access to health care. Often people with disabilities incur higher costs and out-of-pocket expenditures for health and social care (World Health Organisation, 2021). For example out of 75 million people who need a wheelchair, only 5%–15% have one; and out of the 466 million people who need hearing aids, only 3% of people living in developing countries needs are met against a global figure of 10%; (WHO, 2017). Across the globe, only 28% of persons with disabilities receive disability benefits (United Nations, 2018).

Disability is a complex social phenomenon deeply embedded in economic development, religion, and culture (Shakespeare, 2018). It is a political term entrenched in identity politics and struggles for recognition like race, gender, and sexual orientation movements. The success of the disability movement has shifted attention away from individuals to societal institutions’ responsiveness to these needs. LMICs have unique circumstances that might further accentuate the number of disabled people. As Figure 1.1 (Supplementary material) depicts, disability includes, in its scope, permanent and temporary disabilities with various ramifications on health and welfare services. For instance: disfigurement caused by leprosy might be very specific to India, whereas the prevalence of learning disabilities might be related to poverty and deprivation among Roma, Pakistani, or Bangladeshi migrant communities in developed countries. For example, polio prevalence in India was eradicated in 2012, but children and young adults still live with the health repercussions (Dias and Anand, 2016). Economic factors also play a role. For example, poverty is associated with malnutrition and inadequate access to public health services, such as immunisations, vaccinations, poor housing conditions, lack of clean drinking water and toilets, and shoddy work and safety conditions in schools and universities (Kuper et al., 2018). Other disabilities include intellectual disability, epilepsy, and mental illness, associated with consanguineous marriages (Lakhan et al., 2017). Furthermore, low social-economic status is also associated with a higher prevalence of learning disabilities and behavioural problems in LMICs (Simkiss et al., 2011).

Disability is an ‘interpretative category’ that primarily denotes social circumstances (Titchkosky, 2010:200). Stigma is a potent source of social control which demarcates categories of ‘normal’ and ‘abnormal’. Stigma and discrimination set some individuals apart from most of the population because of their specific physical and psychological attributes, characterised as ‘abnormal’. At individual levels, stigma, and discrimination shape individual perceptions of self-based on familial socialisation processes and interactions among individuals, groups, and communities. At societal levels, stigma shapes social relations based on the dominant and acceptable power locations of certain groups or individuals about PWDs they define as ‘abnormal’. Biologically, we are endowed with genes that predetermine our physical being, whereas social reproduction shapes us into human beings who perform various social functions. The meanings of enablement and disablement are inscribed onto us, shaping everyday existence. All individuals are type-cast into categories so that society can function efficiently through established social systems. Individuals are socialised to conform to societal categories. The notions of abnormality are often intrinsic to social reproduction processes, as it clearly defines who should be included and excluded from society as a deviant. ‘Insider-outsider’ and ‘normal-abnormal’ binaries are central to society's identity creation and group cohesion. These categories function as social control, often exercised by violence, such as abuse or discrimination.

Erving Goffman (1963:11) wrote that ‘society establishes the means of categorising and the complement of attributes felt ordinary and natural for members of these categories’. The myths of the weak moral status of a person are associated with the disfigurement of the body. Goffman (1963:14) notes that a person with a stigma may not be considered quite human. On this assumption, we exercise varieties of discrimination, through which we effectively, if often unthinkingly, reduce one's life chances (Goffman, 1963). The human body is a part of political assemblages, at the heart of which is the social embodiment (Connell, 2011). As participants in social dynamics, we are socialised into believing that our bodies are impaired or disabled. If our bodies are emancipated from modernist notions of beauty and ableism, we can reimagine our bodies as complete. Connell emphasises how ‘the ontoformativity of social process constantly involves social embodiment. Social embodiment is not just a reflection, not just a reproduction, not just a citation. It is a process that generates, at every moment, new historical realities: new embodied possibilities, experiences, limitations, and vulnerabilities. Thus, we should understand disability as it emerges through time. Disabled people are involved in a political process of rediscovering their own histories’(Connell, 2011: 1371).

Within LMICs, colonialism and intersectionality add additional caveats of caste structures, race and ethnicity, and geo-politics to the understanding of disabilities and abilities. Nguyen (2018) has questioned the geopolitical contexts of understanding disability; applying the lens of colonialism, she examines disability as born out of the violence of the Global North toward the Global South. Nirmala Erevelles (2011) refers to Johan Galtung's structural violence and denial of social justice to marginalised communities. The representation of disability as a ‘deadly status’ (Titchkosky, 2007, p. 108) has led to the everyday torment of disabled people. Transformative knowledge is extricating these everyday experiences of the disabled as normal and presenting them as symbols of injustice in their stories and voices (Erevelles, 2011). Often the disabled do not have direct access to representative politics. Such as in the case of the cognitively impaired who are represented by their carers. Carers are marginalised as their work is less valued as it involves caring for the disabled (Nakray, 2010). CRPD promotes progressive values, but when it comes to implementation governments often fall short. Ideationally, stigma and discrimination can be explained by the low priority given to the disabled (Spicker, 2011). Historically, social policies have either reinforced stigma and discrimination with terms such as ‘undeserving poor’, paupers, and benefit scroungers often dominating policy and media discourses due to the inability of some groups of people to earn an independent income through a traditional means of a job or business. At practical levels, there are several impediments to progressive policies. As Meyer et al. note ‘nation-states, are structurally similar in many unexpected dimensions and change in unexpectedly similar ways’ (1997: 145). Therefore, this proposition presupposes the simplistic transfusion of policy ideas or principles or plain ‘hypocritical conformism in policy pronouncements’ by national leaders acting as ‘Babbitt’, but they display ‘conformity in practices’ that are antithetical to their pronouncements (Meyer, 2004: 44).

The Continuum of bio-medical and social models of disability: unfinished political agenda

The post-industrial revolution, world wars and medical improvements led to the shift of disability from a specific impairment to social problem (Titchkosky, 2000). In the United Kingdom, Paul Hunt, Michael Oliver (1996), and Vic Finkelstein (1998) were pioneers of disability studies. The establishment of the Union of the Physically Impaired Against Segregation (UPIAS) in 1973 established the ‘Social Model of Disability’ with an explicit rejection of WHO usage of the medicalised notions of impairment/disability/handicap (Ingstad and Whyte, 1995:5–7; Wendell, 1996). Similarly, Henry Enns established the Independent Living Movement and the Coalition of Provincial Organisations of the Handicapped (COPOH) in 1976 (Driedger, 1989). The social model aimed at a paradigm shift from physical impairments and management to the societal conditions that create disadvantages for individuals. The global momentum for greater rights for the disabled culminated in the UN CRPD (2008), which espouses the social and human rights model of disability (Lawson and Beckett, 2021). International law excluded disability in international human rights instruments. Only Article 23 of the Convention on the Rights of the Child (1989) (CRC) mentions “children with disabilities and their needs for special care”. In 1994, the Economic, Social and Cultural Rights (ESCR Committee) started examining disability issues. The ESCR Committee concluded that the Universal Declaration of Human Rights (1948) recognises that ‘all human beings are born free and equal in dignity and rights’ (United Nations, 1948) General Comment No. 5 of the ESCR Committee recognised the physical and social hindrances that people with disabilities must address in their daily living, and discrimination was an area that was seen as a significant impediment for disabled individuals. In 1982, the United Nations adopted the World Programme of Action concerning Disabled Persons (WPA), which recognised the equalisation of opportunities. In 1991, the General Assembly (GA) adopted the Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care (Principles), stipulating mental healthcare standards and procedural guaranties. It protects persons with mental illnesses against human rights abuses. In 1993, the GA adopted the non-binding United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (Standard Rules) 1993.

CRPD was an essential advancement in international law and created possibilities for nation states to introduce domestic legislation which is harmonised to meet international thresholds. At the global level, CRPD led to a recognition that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and active participation in society on an equal basis with others. Persons with disabilities include long-term physical, mental, intellectual, or sensory impairments, which in interaction with various barriers may hinder their full and active participation in society on an equal basis.

Various clauses of the CRPD have made provisions for children and youth such as Article 1.r. which recognises that children with disabilities should have full enjoyment of all human rights and fundamental freedoms on an equal basis with other children. Inclusive classrooms versus segregated classrooms are a result of Article 24 of the CRPD, which has mandated “inclusive, quality and free” education for the disabled. Additionally, CRPD stipulates in Article 27 that States Parties recognise the right of persons with disabilities to work on an equal basis with others (United Nations, 2008).

CRPD is a human rights instrument that addresses social and political rights and promotes freedom from discrimination and the right to participation for disabled people. CRPD has its limitations; it covers many disabilities, but it neglects prevention and treatment and focuses mainly on discrimination. Disability mainstreaming has paternalistic undertones as still it can put the onus on individual problems, as the terminology of rights often implies the responsibility of others to safeguard individuals rather than prevent exclusion by creating enabling environments (Isaac et al., 2010). As Shakespeare (2018) highlights, the social model of disability is a simple approach, as it is primarily an advocacy tool that often obliterates the importance of the medical model. Disability is diverse and requires a nuanced understanding of medical and social models. Medical interventions are at the core of the medical model, therefore, less appealing to the activists and advocates. The social model of disability tends to simplify ‘disability’ and focus on social conditions. Recent developments within the WHO-ICF, 2001, have adopted the bio-psycho-social model. This approach demonstrates that disability is a complex issue that cannot be defined purely as a biological, psychiatric, or social problem. Disability interventions entail various medical and rehabilitation approaches; assistive devices; psychological support; barrier removal; supportive welfare benefits; legal protections; cultural change (Shakespeare, 2018: 22).

The empirical sections of the paper, reinforces the notion that CRPD is stymied by non-enforcement (Kostanjsek, 2011). The cynicism toward a social model of disability that has become ubiquitous in academic and policy circles might be due to its implications on the everyday lives of PWDs. As James Scott (1998: p. 82-83) specifies, ‘categories that may have begun as the artificial inventions of cadastral surveyors, census takers, judges, or police officers can end by becoming categories that organise people's daily experience precisely because they are embedded in state-created institutions that structure that experience’. Most progressive laws and policies are subjected to bureaucratisation and means-testing, leaving the most vulnerable behind. Good intent might motivate academics and activists, but it still can do more harm than good and can impinge on social circumstances without recognising individual needs. James Staples (2018), in his ethnographic work amongst lepers and the disabled in India, demonstrates that following the WHO's declaration that the leprosy problem was resolved, funding disappeared for the local organisations that supported those still living with the consequences of the disease. Charity or begging is often the only resort for people in these circumstances.

Materials and methods

This paper analyses the ratification and harmonisation of CRPD by LMICs as of May 2014 with their local laws and additional developments within the State-Parties such as provision of carer's allowance or paid leave. There is limited comparative data in LMICs on disability policies. The University of California, Los Angeles, the World Policy Analysis Centre have compiled and quantified empirical data on constitutional rights, laws, and policies accessed and analysed (see Table 1.1 [Supplementary Material]). The database draws from constitutional texts in force as of May 2014. The dataset of countries was cleaned and filtered to limit the analyses to LMICs. Most of the data is categorical which restricts the possibility of traditional hierarchical and K-Means cluster analysis used in comparative welfare studies (Bambra, 2007: 326–338; Gough and Abu-Sharkh, 2010). For example, CRPD Ratification Status 1 (Ratified)/0 Not Ratified. Table 1.1 (Supplementary Material) depicts the dimensions based on theoretical discussions in the previous sections selected to analyse how states are doing regarding the implementation of the social model of disability under CRPD.

Latent class analysis (LCA) was conducted using Latent Gold 5.0 for clustering classes based on a set of categorical latent variables. Most of the responses in the dataset are categorical. The classification of countries was carried out by performing an LCA, on 11 (1 binomial, ten ordinal) indicator variables representing 11 dimensions associated with the social model of disability (Table 1.1 and 1.2 [Supplementary Material]; Figures 1.2 and 1.3 [Supplementary Material]). Multiple LCA models were explored with the number of classes set from 2 to 5. The following three steps were used in LCA: (1) a latent class model was built using the available indicators, (2) subjects were assigned to latent classes based on their posterior class membership probabilities (3) The Bayesian Information Criterion (BIC) was used as a fit index to identify the most suitable numbers of classes. This criterion weights the fit (log-likelihood) and the parsimony of a model (number of parameters): the criterion is the lowest for the best model. The optimal number of classes came from the model with the best fit as expressed using the BIC criterion. The descriptive analysis of binomial/ordinal data comprised tabulation of frequency and percentages. The descriptive analysis of continuous data comprised the mean, standard deviation, and extreme values. The profiles of latent classes are reported using both distribution and plots. All analyses were performed using SPSS and Excel for descriptive statistics and Latent GOLD 4.0 for latent class analysis (Vermunt and Magidson, 2005; Vermunt and Magidson, 2013).

Results and analysis

According to the Bayesian Information Criterion (BIC), 3 clusters were selected (Table 1.1;1.2 [Supplementary Material]). Cluster profiles based on conditional probabilities are available in Table 1.2 (Supplementary Material). The clusters are identified by high, medium, and low levels of integration based on the dimensions of legal provisions, education, employment, health, and financial incentives such as paid leave, disability, and carer's allowance. Table 1.3 and 1.4 (Supplementary Material) depicts the cluster-wise analysis of social, legal provisions: fair constitutional guarantees and financial assistance to low-income families, typifying Cluster 1 countries. Cluster 1 (n = 24, 18%) shows a high percentage of CRPD ratification, including fair constitutional guarantees and measures of financial assistance in addition to financial provisions, which support families, children, and youth. Cluster 2 (n = 38, 28%) typified high constitutional guarantees and no financial assistance to low-income families. Cluster 2 comprises countries with a high percentage of CRPD ratification, with high constitutional guarantees but limited financial assistance. Countries in Cluster 3 are classified as low protection countries. Amongst Cluster 3 countries, 70% have ratified CRPD but with low constitutional protection for health and work conditions of persons with disabilities. They have almost no aid or benefit for persons with disabilities, including children (Figure 1.4 [Supplementary Material]).

Cluster 1: fair constitutional guarantees and financial assistance to low-income families

Cluster 1 countries depicted in Table 1.4 (Supplementary Material) include a range of countries from Eastern Europe, Latin America, and Africa, which have progressive legal regimes along with generous payments to low-income families in terms of disability, carer allowances and paid leave.

Legal provisions

Regarding the CRPD ratification, 88% of the countries have ratified the CRPD, and 12% have not ratified it (such as Belarus). The constitutional guarantee has evaluated the access to paid work to the right to work for adults with disabilities. With 22% of countries with no relevant provision or limited to non-disabled persons (Azerbaijan), 40% with no disability-specific protections (Belarus; Macedonia), 10% aspired to work rights for PWDs (Argentina), 14% prohibit discrimination broadly and guarantee work rights (Kyrgyzstan) and 14% of countries guaranteed work rights (Bolivia; Bulgaria; Hungary). Cluster 1 countries, such as Mauritius, have no relevant provisions to address disabilities (3%); 56% of countries have no disability-specific protections (Albania; Azerbaijan; Belarus); 8% of countries aspire to Equal Rights (Angola), and 34% of countries guarantee equal rights (Bolivia; Hungary; South Africa).

Health rights

Among the Cluster 1 countries based on the health dimension, 17% have no relevant or limited provision (Argentina; Costa Rica); 19% have no disability-specific protections (Azerbaijan; Georgia); 9% aspire to health rights (Albania); 34% prohibit discrimination broadly and guarantee health rights (Angola; South Africa) and 21% of countries guarantee health rights to persons with disabilities or free medical services broadly (Tajikistan, Turkmenistan, Ukraine).

Education rights

Countries such as Mauritius have no relevant provisions for education (5%), 51% have no disability-specific protections (Azerbaijan; Romania; Turkmenistan; Ukraine; Uzbekistan), 8% of countries aspire to education rights (Albania; Argentina), 23% of countries prohibit discrimination and ensure education rights (Kyrgyzstan; Serbia; South Africa) and 13% guaranteed education rights (Angola; Bolivia; Tajikistan). CRPD emphasis on inclusive education was evaluated based on the availability of inclusive education for children with disabilities. 2% of countries have no special public education with only some limited interventions by NGOs and organisations outside the public education system, 8% have low degree of integration with separate schools. Over half (52%) have at least some medium degree of integration, i.e., children attend the same school as other students but have separate classrooms (Albania; Argentina; Azerbaijan; South Africa, Tajikistan, Uzbekistan) and 39% have a high degree of integration, which implies that children with disabilities are taught in the same classrooms as other students (Angola; Belarus).

Financial provisions

The recognition of care work undertaken by women and financial provisions such as a care or family allowances are often neglected in mainstream policies within LMICs. Regarding benefits available to families with children with disabilities, 3% of countries provide family benefits that are not means-tested (such as Bolivia), and 97% have specific benefits for children with disabilities. The percentage of countries that provide financial assistance per month to low-income families with one severely disabled school-age child, 2% of countries have no family benefits; 57% provide financial assistance of less than $100 Purchasing Power Parity (PPP) (Bulgaria; Romania; Serbia); 35% provide financial assistance in the range of $100–$199.99 Purchasing Power Parity (PPP) (Azerbaijan; Belarus; Moldova; South Africa; Ukraine; Uzbekistan) and Argentina is the only country, which is providing financial assistance of 500 PPP or more (6%). Paid leave is an essential support for parents or care providers with disabled offspring. The specific question that measures this dimension is ‘how much paid leave is made available to meet the daily and disability-specific health needs of preschool children with disabilities?’ 61% of countries have no paid leave (Argentina; Azerbaijan; Bolivia; Kyrgyzstan; Macedonia; Mauritius), 2% provide leave of less than 1 week (South Africa), 10% provide 1–3 weeks (Albania; Moldova; Turkmenistan), 8% more than 3 weeks (Angola; Bulgaria, Romania; Tajikistan). Another question that can measure this dimension is: ‘how much paid leave is specifically made available to meet the everyday and disability-specific health needs of school-age children with disabilities?’: 61% of countries have no paid leave (Argentina; Azerbaijan; Bolivia), 3% have less than one week (South Africa), 8% have leave of 1–3 weeks (Albania; Moldova; Turkmenistan), 9% have leave of 3 weeks (Angola; Bulgaria; Romania; Tajikistan), and 19% of countries have leave available according to needs (Belarus; Hungary; Serbia, Ukraine).

Cluster 2: high constitution guarantees and no financial assistance to low-income families

Cluster 2 countries have constitutional and legal guarantees for low-income families with children and youth with disabilities but have no financial assistance.

Legal provisions

85% of Cluster 2 countries have ratified (Egypt; Ecuador; Zimbabwe, Mexico; Rwanda), and 15% have not ratified the CRPD (Fiji; Gambia; Guyana; Timor-Leste). In terms of guaranteeing the right to health for persons with disabilities, 18% have no or limited provision (Guyana; Malawi; Swaziland; Uganda), 20% have no disability-specific protections (Brazil, Haiti; Honduras; Venezuela), 9% aspire to health rights (Gambia; Maldives; Morocco; Peru), 33% prohibit discrimination broadly and guarantee health rights (Colombia; Egypt; Fiji; Kenya; Mozambique; Niger; Panama; Paraguay; Thailand; Timor-Leste; Tunisia; Rwanda; Mexico; Ghana), a further 20% of countries guarantee health rights to persons with disabilities or free medical services broadly (Ecuador; Armenia);

In terms of education rights, the question ‘does the constitution protect the right to education for children with disabilities?’ was posited. 7% have no disability-specific protections (such as Egypt; Gambia), 3% of countries aspire to education rights (Morocco), 32% of countries prohibit discrimination and ensure education rights (Niger), and 58% have guaranteed education rights (Paraguay and Peru). The availability of inclusive education for children with disabilities stands at 10% of countries, which have no special public education with only some limited interventions by NGOs and organisations outside the public education system; 26% have low degree of integration with separate schools (Haiti); 22% have at least a medium degree of integration. In these cases, for example, children may attend the same school as other students but have separate classrooms (Gambia; Ghana) and 32% have high degree of integration where children with disabilities are taught in the same classrooms as other students (Egypt).

Financial benefits

In terms of availability of benefits, 62% of countries have no or limited family benefits (Egypt, Gambia), 9% have means-tested family benefits (Brazil; Mexico) and 29% have family benefits that have not been means-tested (Morocco; Niger). These countries do poorly on financial assistance. The question that evaluates paid leave was ‘how much paid leave is specifically made available to meet the daily and disability-specific health needs of preschool children with disabilities?’. 90% of countries have no paid leave (Egypt; Ecuador; Thailand), 2% provide leave of less than 1 week, 4% have leave of 1–3 weeks (Maldives); 2% provide three weeks of leave, and 2% of countries have leave as needed. Another question that can measure this dimension is: ‘how much paid leave is specifically made available to meet the daily and disability-specific health needs of school-age children with disabilities?’ 91% of countries have no paid leave (Gambia), 2% have less than 1 week, 3% have leave of 1–3 weeks, 2% have leave more than three weeks (Maldives), and 2% of countries have leave available according to needs.

Cluster 3: low protection

Legal provisions

Among Cluster 3 countries, 70% have ratified the CRPD, and 30% have not ratified the CRPD (such as Bhutan and Cameroon). The access to paid work has been evaluated based on the constitutional guarantee of the right to work for adults with disabilities. With 58% of countries having no relevant provision or limited to able-bodied persons (Bangladesh; Bhutan), 27% with no disability-specific protections (Afghanistan; Algeria), 5% aspire to work rights (China; Morocco), 8% prohibit discrimination broadly and guarantee work rights (Zimbabwe) and only 2% guarantee work rights. As noted in the theoretical discussions, stigma and discrimination are entrenched in society, CRPD introduces legal provisions for redress among Cluster 3 countries. Out of these countries, 10% have no relevant provision (Sierra Leone); 82% of countries have no disability-specific protections (Afghanistan; Algeria); 4% of countries aspire to Equal Rights (Belize) 3% of countries guarantee equal rights.

Health rights

Among Cluster 3 countries, on the health dimension, which is measured in terms of constitutional guarantee of the right to health for persons with disabilities, 58% have no relevant provision or are limited (Botswana; Eritrea); 27% have no disability-specific protections (Algeria); 5% aspire to health rights (Qatar); 8% prohibit discrimination broadly and guarantee health rights (Moldova) and 2% of countries guarantee health rights to persons with disabilities or free medical services broadly (Afghanistan).

Education rights:

In relation to the question ‘does the constitution protect the right to education for children with disabilities?’; 41% had no relevant provisions (Bangladesh), 57% no disability-specific protections (Afghanistan), 1% of the countries aspired to education rights, and 1% of the countries prohibit discrimination, ensuring education rights. None, however, guarantee education rights. Availability of inclusive education for children with disabilities remains poor, with 8% of countries having no special public education with only some limited interventions by NGOs and organisations outside the public education system (Bangladesh); 17% have a low degree of integration with separate schools (Bhutan); 50% have at least a medium degree of integration where children attend the same school as other students but have separate classrooms (Cameroon) and 25% have a high degree of integration where children with disabilities are taught in the same classrooms as other students (Algeria; Bahrain).

Evaluation of social policies in LMICs

Cluster 1 countries have the most progressive social provisions for children with disabilities. The South African National Development Plan (2010–30) emphasises the need for a comprehensive social protection system to address vulnerabilities and respond to the needs of persons with disabilities, older persons, children, and particularly orphans. It includes chronic illnesses such as Hiv/Aids. The amount of the disability grant stands at 1,500 South African Rands (Zar) (Us$112) and is relatively generous, considering South Africa’s status as a middle-income country (International Labour Organisation, 2016). Argentina signed the CRPD on September 2, 2008, and introduced Law 26378. Argentina is one of the most progressive countries about disability rights. It has instituted several laws such as Act 22431 Comprehensive System of Protection to the Disabled (March 1981); Article 28 of the Act 23661 National System of Health Insurance (1989) covers rehabilitation and medical coverage. Furthermore, Act 24716 on Leave for Mothers of Children with Down’s syndrome (October 1996) provides for 6 months of unpaid maternity leave along with family allowance. Act 18910 provides for a non-contributory pension for disability (Moya, 2016) In Cluster 2 countries, the Brazilian government has launched several programs, Salario Familia, a monthly benefit of Us $13 to families with incomes below $255 or Us $9 if the income is between 55 and $383. Large countries such as India and China appear in Cluster 3, with limited or no social provisions.

Data for 29 developing countries indicate that the amounts received through tax-financed disability schemes are less than 15% of per capita Gdp. Disability benefits range from 51% of per capita Gdp in Uzbekistan and 35% in Brazil, to less than 5% in China and India (United Nations, 2018). According to the Second National Sample Survey of Disabled Persons in China (Snssd) conducted in 2006, it is estimated that China has a population of 5.8 million children living with some disability (Unicef, 2015). According to official statistics, at least 83 million people live with disabilities in China. Over 40% of these people are illiterate. While government figures show near-universal enrolment of children in primary school, there is a significant gap for children with disabilities; 28% of such children are not receiving the education they are entitled to (Human Rights Watch, 2013). China has a deep-rooted history of sympathetic attitudes toward individuals with disabilities, Special Education in China today is much like it was in the United States before the implementation of the Education for all Handicapped Children Act of 1975 (Kritzer, 2011). Cluster 3 country India instituted the Rights of Persons with Disabilities Act, 2016. The new law, which came into effect on April 19, 2017, prohibits discrimination towards the disabled and requires employers, including the private sector, to register their Equal Opportunity Policy with the State Commissioner or Central Commissioner (as applicable). One of the core concerns of the law is creating an accessible environment for the disabled. Advancement toward a social model of disability across LMICs is relatively slow, and most countries have only made token acceptance of CRPD provisions.

Toward a sociology of enablement: making the voices of the disabled count

As discussed in the previous sections, the invisibility of the disabled within mainstream social policies is born out of the complex realities of body politics, social constructions of eugenics and economic hardships. Moreover, carers are more invisible from the policy discussions in LMICs. I write this article as a partial insider; I am a non-disabled feminist social policy scholar who has cared for a disabled female relative. I write about being located within the Global South with lived experience of stigma and discrimination and lack of recognition of being a ‘carer’ and coming from a non-privileged background.

Critical disability studies have pushed the intellectual boundaries of social sciences by highlighting the importance of insider perspectives, reflexivity, and the intersectional nature of disability experiences within the existing social realities. Sociology of enablement is not a means of undermining the achievements of critical disability studies but rather adds more caveats to it. It is born out of witnessing the challenges of living and working in a third world country. The sociology of enablement emerges from the praxis of reflexivity and intersectional analysis of our locations in third world societies. The sociology of enablement should be embodied within the praxis of change with the complexities of everyday life. Disability can be painful, uncomfortable, familiar, alienating, bonding, isolating, challenging, infuriating, or ordinary. Embedded in the complexity of actual human relations, it is always more than the disabled figure can signify’ (Thomson, 1997: 14).

Disability is a different experience in a developing country. Progressive ideas on disability rights have their origins in the affluent Global North which has led to shifts in global norms on disability rights as a universal public good. But these progressive norms often reinforce centre-metropolis divide as disabled continue to be marginal in actual policies (Nguyena et al., 2019). International social and legal provisions such as CRPD shape the normative notions of idealised policies for the disabled and their careers. Also, the universalism of disability rights, sets standards for the ranking of societies in terms of their proximity to advanced economies. Global elites often use universalist notions of liberal disability rights to reinforce the binary divide between rich and developing nations. The LMICs countries still face the challenges of poverty, malnourishment, and the urban-rural divide, further pushing the question of ‘disability’ into the backburner. Besides, the discourses of colonialism have been captured by elites who do not question their locations of privilege of caste, ethnicity, and religion. Furthermore, alongside colonialism, we must acknowledge that pre-colonial forms of oppression have mutilated the bodies of Dalits and women for centuries. Understanding oppression requires dynamism and reflexivity of one’s location in producing knowledge within society’s economic, social, and cultural structures. Intersectionality locates experiences of disability alongside poverty, caste, race, gender, and ethnicity.

The empirical analysis illustrates that the global diffusion of the social model of disability, on the surface, might seem to be a progressive move for disabled individuals. International laws that address anti-discrimination result from global social movements that aspire to establish egalitarian laws within their countries; these reforms are entrenched in strong path-dependency (Slee, 2019). However, scratching the surface reveals that governments are quick to join the bandwagon of international sycophants of progressive norms, and harmonisation takes its course; usually, lofty ideals evaporate in the drafting of policies and programs.

The study shows that the Cluster 1 countries are closer to the social model of disability than those Clusters 2 and 3 countries. The research has generated a mix of results with Cluster 1 countries marked by a more significant number of countries with generous welfare states and typify the essence of the sociology of enablement. High legal compliance characterises the Cluster 2 countries with poor financial benefits adversely affecting families with children with disabilities and youth. Cluster 3 comprises nations with poor compliance with legal provisions and a lack of financial incentives for children with disabilities and youth. The data on disability among children and youth are sparse; most countries follow the ‘asocial’ model of disability. The paradigm shifts in disability movements have been instrumental in shifting the onus from individuals to societal conditions. The skilful use of “disability” draws attention to the problem and initiates the political action, but often tends to obscure the complexity of terms. The need to move toward a sociology of enablement that brings attention to individual bio-medical needs and social conditions of stigma, discrimination, and deprivation is an important finding of this research.

In conclusion, disability is a complex human condition, which plays on the stage of life, in which the social meanings of disability and ability are inscribed onto the human body. If the human body is conceptualised as an assemblage of ability and disability, it creates the possibility of emancipatory politics for social policy. Sociology of enablement is an artistic expression of freedom to use different shades of colours on a canvas beyond the binary notions of perfection and imperfection. It is artist's pencils and paint brushes that give expression to their thoughts and feelings. The human body is also an artistic expression of self being and universal plurality. What brings us as humans together is the intellect, thought and emotions that help us to transcend the physical limitations of the human body. These intellectual discourses often serve as anchors for advocacy politics and policy change. The ontoformativity (reality-forming) (Connell, 2011) allows the intersection of body politics with social dynamics towards a politics of reflexivity and diversity. The sociology of enablement should reflect the dynamism and complexity of our identities and the multiple levels of privilege and marginalisation that we live with every day. The idea of the sociology of enablement should be embedded within the emancipatory politics of participation and reflexivity, in which we recognise the complexity of human life and societies and understand the intrinsic dignity of life. Moreover, social policies emerging from this ideational position will be deeply reflective of their role in reinforcing stigma and discrimination.

Supplemental Material

sj-docx-1-irj-10.1177_07916035231169865 - Supplemental material for Disability policies, transnationalism and policy diffusion: ‘Asocial’ models of inclusion for children and youth in low and middle-income countries (LMICs)

Supplemental material, sj-docx-1-irj-10.1177_07916035231169865 for Disability policies, transnationalism and policy diffusion: ‘Asocial’ models of inclusion for children and youth in low and middle-income countries (LMICs) by Keerty Nakray in Irish Journal of Sociology

Footnotes

Acknowledgements

I am deeply grateful to the Development Studies Association Conference, University of Manchester, June 27-29^, 2018. Panel ‘Shedding light on the experiences and perspectives of adolescents and youth with disabilities in LMICs’ organised by Dr Ola Abu Alghaib; Dr Gerison Lansdown, Dr Nicola Jones and Letisha Lunin for their support and interest. I also acknowledge the support of participants of Social Policy Conference, University of York 2018 for their suggestions for this paper. I am indebted to Dr Paolo Eusebi for his meticulous statistical support and my friends Ramya Aital and Rayan Fernandes who have shared their first-hand life experiences of being physically challenged.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Keerty Nakray

Supplemental material

Supplemental material for this article is available online.

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