Disability & Policy
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Conceptualizing Disability
Disability is a complex human condition. A clear categorization of disability is highly contestable as the boundaries of what constitutes disability remain blurred and changing. The medical model of disability locates the condition of disability in the individual as a pathology and adopts a diagnosis-and-treatment approach. This is questionable as disability cannot be understood without considering its social environment and cultural context of existence. From a holistic point-of-view, the role of society, culture and institutions are paramount in the disability experience as much as the mind and bodily signifiers. As such, disability is best understood in terms of a quasi-social construct and its occurrence on a continuum -- based on the nature and extent of disability. This conceptualization does not play down the need for medical assistance which may be apposite based on particular circumstances. But, it rejects the belief that prevention, cure or rehabilitation of disability is what it calls for. (Marks 1997) Notable disability scholar, Thomas (1999), defines disability in the following words:
"Disability is a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional wellbeing."
The Convention on the Rights of Persons with Disabilities, adopted in December 2006 at the United Nations Headquarters in New York, is a seminal international treaty in the context of human rights and disability, and remains highly influential in understanding disability as a concept. It states its purpose as “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.” Moreover, it identifies persons with disabilities as “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” The adoption of this convention can be attributed to an emergence of a new model of disability -- the human rights model of disability. Quinn and Degener (2002) explicates the human rights model of disability, in the context of international and comparative disability law reform, as follows:
"The human rights model focuses on the inherent dignity of the human being and subsequently, but only if necessary, on the person’s medical characteristics. It places the individual center stage in all decisions affecting him/her and, most importantly, locates the main “problem” outside the person and in society. Each individual is deemed to be of inestimable value and nobody is insignificant. People are to be valued not just because they are economically or otherwise useful but because of their inherent self-worth."
On similar but different lines, the International Classification of Functioning, Disability and Health, an analytical framework adopted in the World report on disability 2011, provides an emphasis on functioning and disability as a dynamic interaction between health conditions and contextual factors. The contextual factors can be environmental i.e. facilitators and barriers like built environment, social relationships, cultural attitudes, public policies and the like, and personal i.e. individual motivation and self-esteem, with due consideration to capacities for performance. The framework categorizes problems with human functioning in three interconnected areas: impairments i.e. problems in body function or alterations in body structure; activity limitations i.e. difficulties in executing activities and participation restrictions i.e. problems with involvement in any area of life. Disability, in that sense, implicates difficulties encountered in any or all three areas of functioning. It acknowledges that policy-making and service delivery requires thresholds of disability to be defined. However, this acknowledgement is problematic as the idea of threshold runs on a slippery slope of inevitably excluding sections of disabled, more so if self-identified as disabled, seeking welfare benefits from public systems and governance programmes.
Disability Challenges
Equal access to health care, education & employment opportunities; accessibility of disability-related services and exclusion from everyday life activities remains a perennial concern for many disabled across geographies. Some disabled are also denied individual autonomy and subjected to loss of dignity. These factors have a bearing on socioeconomic outcomes and quality of life -- thereby putting the disabled at a disadvantageous position vis-à-vis the abled population. Prevalence of attitudinal, environmental, and institutional barriers further limits ability of disabled to exercise agency and reach full human potential -- rendering them incapable of flourishing. Sen (2009) has found that there exists a bidirectional relationship of disability with poverty i.e. disability may increase the risk of poverty and poverty may increase the risk of disability.
It is important to be cognizant of the fact that conditions of disability may be distinct from perceptions of being healthy i.e. some disabled do not consider themselves to be unhealthy albeit high severity of disability. It can be considerably counterintuitive for those who lean towards the medical model of disability. For instance, in the 2007–2008 Australian National Health Survey, 40% of people with severe or profound disability who responded, rated their health as good, very good, or excellent. Thus, generalizations concerning disability can be highly misrepresentative.
Disability is a concern of enormous significance in the global developmental discourse. Youth research indicates that children with disabilities are less likely to attend school, thereby experiencing limited opportunities for skilling, employment and productivity in working-age. (Filmer 2008; Burchardt 2005) Moreover, disability has a detrimental bearing on employment as well. Disabled are more likely to be unemployed and earn less even when employed. (OECD 2010; Houtenville et al. 2009; Contreras et al. 2006; Coleridge 2005) The severity of disability also plays a crucial role in employment and income scenarios -- with employment status and income outcome deteriorating in relation to increasing severity of disability. (Grammenos 2003; Emmett 2006) Since disabled have extra living costs resulting from disability (such as costs of medical support, assistive devices, personal care etc.), a disabled or a family with a disabled member is more likely to experience material deprivation. (Zaidi and Burchardt 2005; Braithwaite and Mont 2009; Cullinan et al. 2010) In addition, factors such as discrimination in employment, limited access to transport and, lack of access to resources for self-employment and livelihood activities makes it difficult for disabled to make the most out of development interventions, and rise above chronic poverty. (Thomas 2005)
Disability is also a diverse experience which cannot be considered under a single umbrella. A disabled might have a unique personal preference and response to his/her disability. (Disability Rights Commission, 2007) Broad brushstrokes in conceptual framing of disability risk taking away effects of intersectional factors like age, caste, creed, ethnicity, gender, residence, sexuality, socioeconomic status etc. -- which contributes to differential conditions of disability. For example, research by Nagata (2003) and Rao (2004) shows that women with disabilities experience the combined disadvantages associated with gender as well as disability. Mehrotra (2006) locates a similar phenomenon in families and communities of rural Haryana wherein disability proves to be an additional burden on marginalised gender position of women. The effects of this gendered inequity is more pernicious than what meets the eye. Through a feminist ethnographic research in Bengal, Ghosh (2010) identifies how gendered dimension of disability implicates the notion of desire and performance in an ableist sociocultural milieu -- thereby internalizing a promlematic ideology of female body as a normative.
Situating India
A statistical profiling of disability helps in understanding the extent and nature of the phenomenon. It also reveals the disparity amongst demographic factors like gender, age, residence, literacy, employment status etc. As per the 2011 Census of India, 2.68 crore persons live with some form of officially recognized disability in the country. That is almost 2.21 percent of a total population of 121 crore persons as of 2011. The percentage of disabled to the total population stood at 2.13 percent in 2001. Among the disabled population, 56 percent (1.5 crore) are males and 44 percent (1.18 crore) are females. The figures indicate that 20 percent of the disabled persons have disability in movement, 19 percent have disability in seeing, 19 percent have disability in hearing and 8 percent have multiple disabilities.
A vast majority (69 percent) of disabled persons live in rural areas. The total number of disabled people in the rural areas is over 1.8 crore, in contrast to 0.81 crore in the urban areas. In rural areas, the increase in disabled was from 2.21 percent in 2001 to 2.24 percent in 2011 whereas, in urban areas, it increased from 1.93 percent to 2.17 percent during the same period. From a household perspective, 8.3 persons (207.8 lakhs) of the total households in the country have disabled persons.
In India, 20.42 lakhs children aged 0-6 years are disabled. The percentage of disabled is highest in the age group 10-19 years (17 percent) followed by age group 20-29 years (16 percent). Elderly (60+ years) disabled constitute 21 percent of the total disabled. Among the disabled males, 18 percent are elderly whereas among the disabled females 23 percent are elderly.
Among the total disabled persons, 45 percent are illiterates. Out of the male disabled population, 38 percent are illiterates and among the female disabled 55 percent are illiterates. In the rural areas, 49 percent of the disabled are literates, while in urban areas, the percentage of literates among disabled population is 67 percent. Illiteracy was high among female disabled in rural areas.
Though 61 percent of the disabled children aged 5-19 years are attending educational institutions, the rate of school attendance of disabled children (5-19 years) is higher in urban areas (65 percent) compared to rural areas (60 percent).
Out of the total disabled population, 36.34 percent is engaged in economically productive activity i.e. working. Among the male disabled persons, 47 percent are working and among female disabled, only 23 percent are working. In rural India, 25 percent of the female disabled are working, while in urban India, the corresponding figure is 16 percent. Among the disabled persons who were workers, 31 percent were agricultural labourers.
46.87 percent of the total disabled persons are currently married, whereas 41.72 percent are never married and 10.29 percent of them are widowed. 3.7 percent live alone. 62.1 percent have some caregiver, 37.7 percent do not require caregiving and 0.3 percent require caregiving but cannot avail.
These statistics need to be read with a grain of salt as data discrepancies due to limited definitional consideration of disability and disability types might alter the estimates of prevalence. (Dandona et al. 2019) Nonetheless, they serve as the best available proxy and play an important role in policy formulations on disability inclusiveness.
Policy Faultlines
India has increasingly embraced disability inclusive policies -- both at domestic and international level by the turn of the century. It is a signatory to the ‘Declaration on the Full Participation and Equality of People with Disabilities in the Asia Pacific Region’ (2000). In addition, it is also a signatory to the ‘Biwako Millennium Framework’ (2002) and ‘Biwako Plus Five’ (2007) initiatives for an inclusive, barrier-free and rights-based society for persons with disabilities in Asia and the Pacific. At a national level, India adopted the National Policy for Persons with Disabilities (2006) which recognizes that Persons with Disabilities are valuable human resources for the country and seeks to create an environment that provides them equal opportunities, protection of their rights and full participation in society. The national policy focuses on prevention of disabilities, rehabilitation measures, conditions of women and children with disabilities, barrier free environment, certification of disability, social security schemes, role of civil society, data & research and sports, recreation & cultural facilities for disabled. India has also endorsed the Incheon Strategy to “Make the Right Real” for Persons with Disabilities in Asia and the Pacific (2012) which provides the Asian and Pacific region and the world with the first set of regionally agreed disability inclusive development goals, and the Leave no one behind (LNOB) principle within Sustainable Development Goals (2015). (MoSPI 2016)
The ratification of the ‘UN Convention on the rights of Persons with Disabilities’ (2008) is a historic milestone for India. The Rights of Persons with Disabilities Act, 2016 was passed to give effect to the convention. It replaced the erstwhile Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995. The Act of 2016 foregrounds nondiscrimination, full and effective participation and inclusion in society, respect for difference and acceptance of disabilities as part of human diversity and humanity, equality of opportunity, accessibility, equality between men and women, respect for the evolving capacities of children with disabilities, and respect for the right of children with disabilities to preserve their identities. Its spirit lies in recognizing disability as a part of human heterogeneity rather than as a blighted ailment.
Despite having a robust policy grounded in disability inclusivity, India has faced challenges in walking the talk. Recently, the Covid-19 pandemic response brought to light such issues through extensive media coverage. In late March of 2020, the Ministry of Social Justice and Empowerment of Government of India released -- Comprehensive Disability Inclusive Guidelines For Protection and Safety of Persons With Disabilities (Divyangjan) during COVID 19. These guidelines informed central and state government authorities to follow certain action points, such as, ensuring information accessibility (braille, sign language etc.); exempting caregivers from lockdown restrictions; exempting employees with certain disabilities from essential services work; training emergency service providers on treating persons with disabilities; providing essential support to quarantined persons with disabilities, etc. The guidelines also focussed on priority in treatment for persons with disabilities. However, reports have surfaced which highlight the gaps and shortcomings in implementation.
Case of accessibility
Digital applications are Aarogya Setu and Cowin has proved to be a critical component in controlling the spread of coronavirus and vaccination drive respectively. However, their accessibility remains questionable for the visually impared due to lack of accessibility features. (Rahman 2020; The Hindu 2021) Similarly, some health information issued by notable government agencies are not accessible by the visually impared for not following OCR/Epub format or braille. (Outlook India 2020)
The Rights of Persons with Disabilities Act, 2016, guarantees “equal protection and safety” of persons with disabilities during disaster management (in Section 8). It requires a district-wise record of persons with disabilities and mandates district authorities to inform them of their risks during the disaster. Similarly, Disaster Management Act, 2005 lays down the institutional and coordination mechanism for effective management of disasters at the national, state, district and local levels. And, provides a comprehensive system of facilitating inclusion. However, a survey by National Centre for Promotion of Employment for Disabled People (NCPEDP) has identified severe implementation deficiencies which signifies inconsistency in policy uptake.
Case of assistance
Persons With Disabilities dependent on caregivers face difficulties in following social distancing norms as close proximity of the caregiver becomes necessary for performance of certain day-to-day activities. Similarly, no-contact practices are detrimental to Persons With Disabilities having visual and locomotor disabilities, who depend on touch functions for mobility. Thus, sans reasonable accommodation, Covid-appropriate norms and practices violate principles of inclusivity.
There are social protection schemes like National Social Assistance Programme and Pradhan Mantri Garib Kalyan Yojna with special provisions for the disabled. However, threshold criteria for disability, requirement of disability certificate and delayed payments make these schemes out of reach for many despite being disabled. (Dastidar 2021)
Special case of Autism Spectrum Disorder
One of the most marginalized segments within the population of disabled is those with intellectual disability (ID). It possesses the greatest risk factor for death from COVID-19. (Thomas Jefferson University 2021) This is so because (i) ID can limit understanding of health information -- thereby necessitating utmost reliance on caregivers to be informed; (ii) restrictions on day-to-day activities are susceptible to induce mental stress amongst people with ID -- which can result in increase in challenging behaviours, higher risk of breakdown and increased dependence on psychotropic medication; & (iii) people with ID becomes more vulnerable to exploitation by others when community support recedes. (Courtenay and Perera 2020) Similarly, research studies have found that children with Autism Spectrum Disorder (ASD) -- a developmental disability are particularly vulnerable to negative impacts of the COVID-19 pandemic due to risk of exacerbation of ASD symptoms, restricted access to therapy, and abnormal expectation of caregiving responsibility. (Bellomo et al. 2020)
As per a WHO fact sheet on Autism spectrum disorders, it is estimated that about one in 160 children has an ASD globally. This estimate indicates an average value. Reported prevalence differs considerably amongst various studies. For instance, some well-controlled studies have reported figures that are substantially higher. It is noteworthy to mention that the prevalence of ASD in many low- and middle-income countries is unknown. (WHO 2021) Prevalence of ASD in India has not been clearly established so far due to scarcity of high-quality population-based epidemiological studies. There remains an urgent need to study the burden of ASD in India -- a country of nearly 1.3 billion people with children ≤15 years constituting nearly one-third of the population. (Chauhan et al. 2019)
Operationalizing research to understand the prevailing burden and attendant challenges of ASD in India can contribute to providing better healthcare and educational support, and rehabilitative services, for those in need. Research findings can also augment health policies to take into account the special case of ASD -- more particularly in trying times like that of Covid-19.
The Covid-19 pandemic has brought to the fore the special case of marginalization of disabled once more to the public discourse. It is an opportune moment to rethink the limitations of reasonable accommodation and adopt universal design as a guiding principle in disability inclusiveness. (Ghosh et al. 2020) Disability policy -- despite its resolve for inclusivity -- fails to address inequalities at various junctures. If policy has to proactively address the concerns and special needs of disabled, it would stand on a better ground by factoring in principles of universal design in policy formulation at all stages of decision-making.
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