Abstract
This study reports on findings from 25 semi-structured, individual interviews with participants with visual, hearing, or mobility disabilities in India focusing on stigmatization and resilience, and how they are constructed within Indian sociocultural contexts. Participants’ experiences of disability and stigmatization were alleviated or exacerbated by sociocultural issues, including socioeconomic status, caste, and gender hierarchy. A lack of family support and access to education further reinforced stigmatization. The case from India underscores the importance of addressing these intersectional issues, as well as stigmatization and resilience, to comprehensively support individuals with disabilities. Implications for practice, disability policies, theories, and research are discussed.
Introduction
Globally, about 15 percent of the population have disabilities (World Health Organization [WHO], 2011). Higher disability prevalence is reported in low-income countries due, in part, to individuals’ lack of access to health care services (WHO, 2011). Given the increase in the number of people with disabilities worldwide, social work has expanded its role to include advocacy for their rights (Mackelprang, 2013). Yet relatively few studies examine the voices of individuals with disabilities, especially those living in poverty (Rao and Kalyanpur, 2015).
People with disabilities and their families face significant challenges due, in part, to stigmatization. Stigmatization is a response to socially undesired differences, including labeling, stereotyping, status loss, discrimination, and negative emotional responses (Goffman, 1963; Yang et al., 2007). In many cultures, for instance, people with disabilities are segregated from social opportunities, including education and employment (Mackelprang, 2013; WHO, 2011). Disability and associated stigmatization also are cultural constructs, and understood and experienced differently across cultural groups (Varenne and McDermott, 1998) that vary in societal responses to disabilities, including disability policies and expectations for people with disabilities. Thus, it is necessary to understand the experiences of disability within particular sociocultural contexts. A few studies however, examined the experiences of stigmatization associated with disabilities in non-Western countries (but see Haight et al., 2016), which creates a limited knowledge base on how to formulate culturally sensitive programs.
How individuals experience disability and stigmatization also varies even within cultures due to other sociocultural issues, such as socioeconomic status, parents’ level of education, access to other people with disabilities (Darling, 2013), and gender roles/expectations (Dawn, 2014). Sources of resilience, such as support from family members and friends (Conder et al., 2015), can further diversify individuals’ experience of stigmatization. Resilience can be defined as individuals’ capacity to negotiate with and overcome risks by utilizing available resources within their families, communities, and the larger society (Murray and Doren, 2013; Ungar, 2008). While stigma is a long-studied phenomenon, the study of how stigmatization and resilience intersect with individuals’ everyday experiences in particular sociocultural contexts is a more recent trend in the literature (Craig, 2012). Such studies can inform strategies to better address individual needs.
This study examines variations in the experiences of stigmatization and resilience by individuals with disabilities and how they intersect with sociocultural contexts of India. India provides an important context. Social hierarchies and privilege in India, which are reinforced by family income, caste, access to education, traditional gender roles, rural status, and ethnicity, can highlight multiple intersecting forms of stigmatization and resilience experienced by people with disabilities (Buckingham, 2011; Rao and Kalyanpur, 2015). Our findings from India can sensitize professionals and scholars from around the world to stigmatization, resilience, and intersectionality associated with disabilities, and provide insights into creative and new approaches to support for individuals with disabilities in their own cultures.
Theoretical approach
This study approaches the intersection of disability, stigmatization, resilience, and sociocultural contexts guided by developmental cultural psychology (e.g. Miller et al., 2003). Individuals are socialized to learn cultural meanings of disability and stigmatization in their everyday interactions with others, including their parents, peers, educators, and other community members, reflecting certain culturally based beliefs (Varenne and McDermott, 1998). Yet culture is not monolithic. Individuals’ experiences of disability can vary even within a perceived cultural group due, in part, to diversity in individuals’ characteristics, social status, and everyday interactions with others (see Morson and Emerson, 1990). For example, people may experience the same disability differently, reflecting their own personality and the availability of and access to sources of resilience, including community resources, family support, and educators who support their education. Thus, in order to understand the experiences of individuals with disabilities in India, it is necessary to examine their everyday experiences in their relationships with others, including at home, at school, and in the community, as well as beliefs, practices, and policies pertaining to disability embedded within Indian sociocultural contexts, as detailed below.
Sociocultural contexts in India
India is a complex and diverse society (see Addlakha, 2007; Rao and Kalyanpur, 2015). Approximately 1 in 12 households across India is reported to have a family member with a disability, many of whom do not have access to education or employment opportunities (O’Keefe, 2009). On the other hand, some individuals with disabilities have access to higher education. In India, these experiences of disability are understood as intersecting with other sociocultural issues (Rao and Kalyanpur, 2015), such as social class, access to education and medical care services, and gender hierarchy, as well as general beliefs about disability. Further, disability policies that are transitioning from historical exclusionary conceptualization to emerging rights-based approaches (Srivastava and Kumar, 2015) affect the experiences of individuals with disabilities.
Traditional cultural construction of disability
Generally, beliefs about disability in India are influenced by religion (Buckingham, 2011), such as the Hindu theory of Karma, or the child’s own misdeeds including in the past life. 1 The birth of a child with a disability may be believed to be a result of the family’s or their own past misdeeds (Chopra, 2013; Edwardraj et al., 2010). When children with disabilities are born, their mothers may blame themselves, for example, believing that their unstable mental health during pregnancy caused their children’s disabilities (Edwardraj et al., 2010). Some individuals, especially in rural areas, may not seek appropriate medical treatment, believing that certain symptoms are caused by their misdeeds. They may try ritualized practices before consulting with medical doctors, which can lead to severe consequences. Furthermore, in cases of extreme poverty, a family priority often is just to survive. The need to work may come at the neglect of their own and their children’s health care needs (Staples, 2012).
Furthermore, individuals with disabilities may not be considered as members of their society. Some are neglected by family members or prohibited from participation in social activities (Chopra, 2013). People with disabilities and their family members also may face pity and sympathetic responses in the larger society (Antony, 2013), reflecting general beliefs in India that giving money and personal possessions to people with disabilities will facilitate good karma. This practice, however, further excludes people with disabilities from Indian society (Antony, 2013; Staples, 2012).
Social class and caste
In contemporary Indian society, individuals are formally classified based on their socioeconomic status, but the caste system still has a strong influence on individuals’ social interactions and their future opportunities. While higher caste families have enjoyed access to educational and governmental institutes, families classified as lower castes (i.e. scheduled castes) and indigenous groups (i.e. scheduled tribes) have been historically oppressed and have had limited access to public resources (Buckingham, 2011). Disability complicates such social dynamics (Antony, 2013; Buckingham, 2011). Individuals with disabilities from lower castes or tribes face greater challenges due to the cumulative effects of their social status, caste, and disabilities. The incidence of disability is higher among individuals in scheduled castes than other groups (Prasad and Patel, 2015) due, in part, to their limited access to medical care and inadequate nutrition. Their economic and social exclusion then reinforces stigma for individuals with disabilities in the larger society.
Gender hierarchy
Gender dynamics also can result in differentiation of responses to disability. Females have to negotiate and face discrimination due to gender, as well as disability (Buckingham, 2011). Gender roles and expectations in India can limit access to health care services, education, and employment opportunities by females, especially those with disabilities. For example, girls with disabilities who will not be able to fulfill the normative roles of wife and mother are more likely than boys with disabilities to be kept at home by their parents (see Addlakha, 2007). Girls with disabilities are also at higher risk for sexual abuse by their family members than those without disabilities (Dawn, 2014).
Public education
For people living in poverty and those with disabilities in India, education generally is understood as providing opportunities to move into middle and upper classes (Antony, 2013). The education system in India, however, is structured in such a way that access to certain types of education that can lead to upper class positions is generally limited to children from middle- and upper-class families because of cost and quality considerations. For instance, instruction in English, which is typically offered only in private schools or in proximity to quality government schools, can provide children with opportunities for obtaining higher class positions (Antony, 2013; Rao and Kalyanpur, 2015). The perception of English skills as the ‘passport’ to success in India originated in the colonial period during which English was imposed as an imperial language to deny the entry of Indian people to the civil services. Private missionary schools were established to provide Indian children with opportunities to gain English skills (Rao and Kalyanpur, 2015). Yet these private schools charge fees, and only children from middle- and upper-class families can benefit from such services. Most children from lower-class families, except some attending government schools, attend free public schools run by each state where instruction is delivered in local languages (Antony, 2013) with limited educational resources.
Furthermore, children with disabilities are five times more likely than those in the general population to be out of school (O’Keefe, 2009). Even if they attend schools, they may be segregated in special education schools regardless of their social class (Rao and Kalyanpur, 2015). After the passage of the Persons with Disabilities Act in 1995, the concept of inclusive education has been reinforced and widespread in local public schools across the nation (Srivastava and Kumar, 2015). Yet the level of local implementation is inconsistent, in part due to educators’ lack of skills and knowledge (Das et al., 2013).
Disability rights
Influenced by the Convention on the Rights of Persons with Disabilities (United Nations, 2006) and other international organizations, disability laws in India have been shifting from the welfare model to the rights-based approach (Srivastava and Kumar, 2015). This shift increases the opportunities for people with disabilities to access appropriate health care, education, and employment. These laws, however, have not been implemented consistently, in part because the laws do not clearly state consequences of non-compliance, as well as local governments’ lack of financial resources (Chopra, 2013). On the other hand, a number of non-governmental organizations (NGOs) have been developed and have provided services to improve the livelihood of individuals, including those with disabilities (Edwards, 1999). Individuals with disabilities have benefited from services provided at NGOs, such as therapeutic interventions, vocational training, and advocacy (see Government of India, 2016).
The current study
This study is part of a larger qualitative study examining the experiences of individuals with disabilities within the Indian sociocultural contexts. This report focuses on stigmatization and resilience. Our research questions are as follows:
RQ1. How do individuals with disabilities experience disability, stigmatization, and resilience in India?
RQ2. How do sociocultural contexts in India (i.e. social class, education, employment, and gender) affect their experiences of stigmatization and resilience?
Methods
Site
Our research site is a large urban city in India. The city has several higher education institutes, NGOs providing advocacy and vocational services for individuals with disabilities, and numerous slum areas. English is used in colleges, some schools, and other formal settings, but local (Mahrati) and national (Hindi) languages are typically used in everyday conversations. This city has a large number of migrants from other regions across India, including college students and those who came to seek job opportunities (see Kayama et al., 2019).
Participants
Participants were purposely selected to obtain diverse perspectives in terms of gender, employment and educational status, and the types and severity (from mild, e.g. partial visual impairment, to severe, e.g. paralysis) of disability. This study particularly focuses on full-time employees, graduate students, and those receiving vocational training after leaving or completing public education, who are likely to have the capacity to utilize sources of resilience to navigate stigmatization. In order to highlight their school and work experiences, participants with visual, hearing, or mobility disabilities were selected, as they were more likely than those with intellectual disabilities to have access to education and employment opportunities.
A total of 25 individuals with disabilities (10 with visual impairments, 7 with hearing impairments, and 8 with mobility disabilities) participated. The majority of them were in their 20s and early 30s (age range from 20 to 49); 12 participants (48%) were females, 11 were Master’s-level graduate students, and 9 were trainees at a local NGO providing vocational training for individuals with disabilities. This NGO offers a variety of courses, including in computer skills and English, as well as therapeutic sessions. The rest of the participants were employees of a higher education institute or NGOs providing disability services. Many of them moved to the urban city that served as our research site, as graduate students or to seek employment opportunities including vocational training.
Research team
This study was conducted by a multicultural (i.e. India, the US, and Japan) interdisciplinary (i.e. social work and comparative/international education) research team. Our diverse backgrounds provided both insider and outsider perspectives to understand participants’ experiences. Sandhya Limaye (S.L.) is an Indian scholar, and Christopher Johnstone (C.J.) has been collaborating with Indian scholars for the past two decades. In order to gain insider perspectives, Misa Kayama (M.K.) and C.J. also conducted 1-week participant observations in 2014 at the research site, including the NGO and the higher education institute from where our participants were recruited. These insider perspectives allowed us to interpret and contextualize participants’ perspectives within the Indian sociocultural contexts. Our insider perspectives on disability (M.K. with a mobility disability and S.L. with a hearing impairment) also provided insights into participants’ experiences of stigmatization and resilience. In particular, S.L.’s use of sign language allowed us to conduct interviews with participants with hearing impairments. In contrast, our outsider perspectives allowed us to identify issues taken for granted by insiders (Morson and Emerson, 1990), such as stigmatization in India, that are contextually different from those in Western countries, and to gain deeper understandings of experiences of disability in India.
Procedures
As described in Kayama et al. (2019) S.L. contacted a higher education institute and a local NGO providing vocational training for people with disabilities, introduced this study, and asked them to provide names and contact information of youth and adults with disabilities who were interested in the project. S.L. then contacted them individually to schedule interviews. All individuals nominated agreed to participate.
Data collection occurred in 2014–2015. Individuals with disabilities participated in 20- to 70-minute semi-structured individual interviews. Interviews with all but one participant with hearing impairments were conducted in written and sign languages by S.L. and detailed notes were taken during and immediately after the interviews. The rest of the interviews were audio-recorded. They were conducted by a local graduate student primarily in English, but some participants used both English and Hindi. During the interviews, participants were asked to describe their perceptions of disability; everyday experiences at home, school, and work; and their social network.
Data analyses
All audio-recorded interviews were transcribed verbatim and translated into English by an Indian graduate student in the US who was fluent in both English and Hindi. Detailed notes from interviews in sign language were typed by S.L. Using analytic induction techniques, emic codes, such as stigmatization and resilience, were induced through repeated readings of interview transcripts and notes to understand participants’ experiences and perceptions (Schwandt, 2007). The initial analyses were conducted by M.K., and codes were revised based on critiques and feedback from C.J. and S.L. focusing on interpretations of identified themes within the Indian sociocultural contexts. The credibility of our analyses was enhanced by member checks and peer debriefings (Schwandt, 2007) including at conference presentations in both the US and India.
Results
Participants described the social construction of disability. All participants, for instance, commonly discussed challenges in navigating stigmatization. Yet their experiences were diverse and highly individualized due to other sociocultural issues such as social class and gender, as well as their access to sources of resilience, including support from parents, friends, and educators.
Stigmatization: Understandings of disability as a social construct
Most participants described disabilities as a social construct that stigmatizes them. They characterized themselves as ‘normal’, for example because they were working and earning money. However, participants also expressed a feeling of being ‘different’. They generally were aware that they did certain things differently than was normatively expected and needed support to perform some daily activities, which made them feel that they did not meet societal expectations. Furthermore, other peoples’ negative responses and attitudes toward them underscored their differences. A female participant with a visual impairment described others’ such attitudes: I went there [to open a bank account]. They were so reluctant. They gave me only the pass book. Then I told them [to give me an ATM card], but they said, ‘No, we cannot. According to our rules, we should not’. Then there is a government order that states even though a person is blind, you should give all the accessories … [but] they were so mad at me. [They eventually gave me an ATM card], but … at the back of the ATM, they wrote, ‘Visually Impaired’. I didn’t notice that in the beginning. [Later], one of my friends, she noticed [it] and told me. I was so furious, why they have to mention [it] without my consent.
Similarly, another participant described that others may address him as ‘Blind’, instead of his name. He continued: When I go to villages, [and] go to illiterate people’s houses, they will call me the way I am. I mean … they will not call me ‘visually impaired’. They will call me what [I look like]. They will call me actually, ‘Blind’ … So, for me, these are the concepts formulated by others … I don’t see [that I’m blind].
General understandings of disabilities in India further exacerbated stigmatization toward participants, who had a large degree of autonomy and independence in their lives. The majority of participants rejected the connotation of people with disabilities as depending on others in the larger society. A male participant expressed his frustration: ‘I went to a bank to open an account, and someone came [out] from inside and gave me a rupee [equivalent to 1.5 cents]. Now what do I tell him [and respond]?’ Another participant expressed her pride in working independently. However, she faced challenges at home with her mother and sister: ‘[They only] want my money. They always shout at me, call me as “beggar”, … and ask me to leave the home.’
Sociocultural issues exacerbating stigmatization
Gender differences and expectations
Safety issues in the community, including recurrent issues such as rape, can further marginalize females with disabilities. A female participant described her hesitation to travel by herself: [A] mistake that people [make] is, if they see another visually impaired person who does certain things, like … traveling alone, they [tell me], ‘Why can’t you travel [alone]?’ I feel like he is traveling, maybe he must be trained from childhood, and moreover he is [a male]. No matter what we talk about feminism and all these things, but yet things will happen. He is a boy. Safety-wise, he is [at] a lesser risk than me.
In addition, parents’ expectations for their daughters’ marriages pressured female participants. Some female participants discussed that in India marriage is a family’s decision, and frequently arranged by parents. They described that their disabilities can negatively affect their marriages. A female participant who recently partially lost her vision described her parents’ responses: They would not like to reveal [my disability] … because the marriage thing and all goes on so they don’t really want to tell anybody … I am asked not to tell, so I don’t. And it is not visible, so I don’t have to. Very few of my relatives know, … [but] in some situations, … [I want to let other] people know. Otherwise they wouldn’t know [that I need support].
Despite a long tradition of arranged marriages, many female participants described that they were in self-selected relationships with someone. Yet they perceived marriage as a multi-family event that had to be prioritized over their personal choice of dating. Some female participants described that their relationships were terminated by their and their partners’ parents due to their disabilities.
Family income and social class
Participants from low-income families described limited access to health care and medical services, including necessary medical treatments for their disabilities, primary and secondary education, and higher paying, stable jobs. Some even acquired their disabilities after receiving inappropriate medical treatments or vaccinations. A male participant, for instance, described, ‘I had polio at 6 months [of age]. I [ just] had pneumonia. . . . [The] doctor gave me an injection and there was a side effect’. Others also had to give up continuing their education due to family and accessibility issues. For example, a 33-year-old male participant who acquired his mobility disability at the age of 10 started first grade when he was 15 years old because ‘My father did not have his own room. We rented here and there’. He left school after he completed seventh grade due to the long distance he had to commute by walking, which is especially hard to manage for individuals with mobility challenges. Other participants also reported that they walked several kilometers on crutches to their schools and local train stations.
Most participants from lower social class families worked as trainees at a local NGO and received vocational training that prepared them to work as housekeepers at local hotels, telephone operators, and so on. Their priority was earning money for their families. Despite stereotypes of dependency, some participants were the primary or sole earners in their families. One male participant with a mobility disability described: I failed in SSC [Staff Selection Commission, a requirement to become government employees] … My dad had a shop, so I started sitting at my dad’s shop. Then my dad died, and I couldn’t go ahead with my education. Then … my mom is there, she stayed in the village … We are five brothers. They were also staying in the village, so all the responsibility came on to me. For a year, I managed somehow at the job … at the shop.
This participant was willing to continue his education, but later took a low-paying position at a local hotel. He worked there for several years without any promotion or adequate accommodation, until he began to receive vocational training at a local NGO. For those who were working in low-paying jobs, like him, there was hope that NGOs could provide training to obtain skills to apply for more stable, higher paying jobs. Another male participant with a mobility disability elaborated: I came here to search for jobs … I wanted to learn computers but then I [didn’t] have enough money to go and learn computers from somewhere. I just searched and found that [this NGO] teaches computers and gives training. So I came here.
In contrast, most participants from upper- and upper-middle-class families had access to formal higher education. Although they described some challenges due to their disabilities, such as transportation, communication, and accessibility issues, they also had resources to handle those challenges. For example, they could afford to commute by taxi and receive speech therapy sessions. Disabilities were not major issues that hindered them in pursuing their interests. One graduate student described her experiences of receiving public education in the UK and her transition back to India: When we have gone to the U.K. [when I was around ten], I had learned to become more [assertive] because the English culture [emphasizes civil rights] … They taught us to study smart. So when we came back to India, I had a hell of a time to adjust … And I must be around 12–15 … You know how schools are [in India]. That brought a lot of challenges when a lot of teachers said I shouldn’t be studying Math or Science.
She was particularly proud of her English skills, which gave her a privileged status and access to prestigious universities. She enjoys pursuing her own desire to become a professional writer.
Sources of resilience alleviating stigmatization
Family support and access to education
Many participants received family support to navigate their disabilities and stigmatization. Participants with college degrees, for instance, described support from their parents, who valued education as a step to move up to a higher social class. A male graduate student described: [When I was a child, at school], I was learning and I was stepping forward in my life. In terms of my family, I am coming from upper-middle class family. Parents are not that much formally qualified but they emphasized our education at a great extent.
The level of education also affects how individuals perceive themselves in the social hierarchy, even within their extended families. One graduate student who grew up in a less educated family in a rural village described his relationship with his cousins: I [was] born in [a small village]. My father is a farmer … We have a big family and we have our cousins, uncles, everybody was there and they all are employed. They work in army [and] navy …. Their children used to study in a Naval Public school [run by the Indian Navy] … One thing always striking me [was] that I was not able to talk with them because they were more educated. I had my education from my school [in the] village. I remember we used to sit on floor on plastic [bags].
Yet his father valued education, and later transferred him to a private school. His father indeed had higher expectations for him, and wanted him to be an employee at a government office, which is a promising position that could lead his family to a higher social class. He continued: [My] father said, ‘Go for Physics, Chemistry, [and] Math’ … He wanted me to get a good post in a government sector. Every father expects that from the class where I belong. He wanted to do so many things for me. … I came [to this prestigious institute in social science]. He [is] believing in me.
Participants from lower income families also described their parents, who sought medical treatment for them and found schools that accepted them and provided necessary accommodations. This was not easy, especially for parents who did not have access to resources, including transportation. A female participant with a visual impairment described her mother, who did not speak a local language:
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In normal [local] school, … 1 or 2 years, I studied there, [but my vision] began [getting] worse. My principal at that school took initiative to find for me a special school … [However], that school was very far. . . . My mom used to find [it] very difficult to bring me back home for the weekends, [because] my mom didn’t know [the local] language.
Family members also helped them gain skills to perform everyday activities independently. A male participant described that such family support did not allow him to excuse himself because of his disability, and gave him confidence: I used to get so tired, so tired. I used to go to school by myself [despite my mobility disability], and in a month at least one shirt and one pants used to get torn. Just to walk [by my hands]. In fact, I never used to take anybody’s help. My mother and father used to say that whatever you do, do it on your own. They used to boost my confidence and in this way, I completed my graduation in normal [local] school.
Support from friends at school
Many participants identified at least a few friends at school and college who supported them to complete assignments and encouraged them to become independent. Some friends were actively involved in advocating for them, and encouraged them to overcome challenges when they were reluctant. A female graduate student with a hearing impairment described her friend’s encouragement and guidance: I met one boy from social work. He understood that I was less confident and nervous. He asked me to go to a dining hall, … and talk every day to two new people to be familiar with communication. This strategy really helped me, and my social life [was] expanded and many students [got to] know how to help me, how to communicate with me. I also got [to] practice communicating with different kinds of people. That gave me more confidence.
Support from educators
Many participants also described support they received from educators. Teachers at primary and secondary schools played especially significant roles. They described teachers who supported them to complete secondary education and opened up opportunities for higher education, including financial support. A male graduate student described: There are three teachers who are very important for me and my life, not only emotional support. Even economically, they supported me a lot. When I had to take the admission [exam for my Master’s program], I didn’t have money, but one of my professors helped me. He said that ‘Whenever you have, you pay, no problem’ … And my school teachers. They were very supportive … to get scholarships from anywhere [to go to college]. I was very good at studying. They helped me a lot.
Discussion
The voices of participants with disabilities in this article highlighted variations in their experiences of disability and stigmatization, reflecting sociocultural contexts in which they grew up, including rural and urban areas across India. Their experiences also intersected with other sociocultural issues, such as gender hierarchy, as well as socioeconomic status which affected their access to secondary and higher education. For example, participants’ experiences were influenced by their family income, access to high-quality education, a competitive labor market, and expectations of marriage. Availability of sources of resilience, including support from families, friends, and educators, and how they utilized these resources further diversified their experiences. Although previous studies have indicated these sociocultural issues that intersect with disability, stigmatization (Buckingham, 2011; Darling, 2013; Dawn, 2014; Rao and Kalyanpur, 2015), and sources of resilience (Conder et al., 2015; Craig, 2012), this study is one of a few illustrating how individuals actually experience stigmatization and resilience. Our participants’ voices allow professionals to understand their responses to stigmatization and other sociocultural issues. In the following paragraphs, we will discuss individuals’ responses to (1) stigmatization constructed broadly in the sociocultural contexts of India, and (2) intersectional issues contributing to variations in the experiences of disability and stigmatization.
Responses to sociocultural construction of stigmatization
Many participants described social exclusion from education and employment opportunities, and obvious discriminations in public facilities, including at banks. They also expressed frustration toward others’ attitudes and societal views of disability that considered them as dependent or even below human. Despite the recent implementations of disability policies pertaining to individual rights of people with disabilities in India, our participants’ discussion revealed that these policies have not been implemented adequately yet, which is consistent with the existing literature (e.g. Chopra, 2013; Das et al., 2013). Some participants indeed had to leave schools or jobs due to a lack of accommodations and accessible public transportation.
Yet the majority of participants consider themselves as ‘normal’ and having the same individual rights. They are motivated to overcome stigmatization and challenges by pursuing either vocational training or higher education. Given the slow implementation of public disability policies, the roles of local NGOs providing social services are critical to the success of individuals with disabilities (Edwards, 1999). Indeed, participants in this study who received vocational training viewed such training as a way to obtain stable and higher paying jobs.
Responses to intersectional issues contributing to diversity
Individuals’ experiences of stigmatization were also exacerbated or alleviated by sociocultural issues such as highly structured social classes and gender hierarchy, which is consistent with the existing literature (e.g. Addlakha, 2007; Buckingham, 2011; Dawn, 2014; Staples, 2012). Participants from higher income families had resources to compensate for a lack of accessibility and accommodations, and access to a quality education including education abroad. In contrast, participants from lower income families faced a greater risk. They made enormous efforts to engage in society, for example by managing to walk long distances on crutches to their schools and local train stations. Some, however, had to leave school, in part to take a low-paying position to earn money for their families. Access to adequate medical and health care services was also an issue for some participants, which indeed resulted in exacerbation of existing impairments or acquired disabilities. In addition, female participants discussed their vulnerability in the context of safety in their community, relative to males, and parental concerns about the impact of their disabilities on their marriages.
At the same time, participants addressed various sources of resilience. Support from family members, friends, and educators played an important role in determining pathways of individuals with disabilities. Such informal support allowed participants, including those from low-income families, to complete secondary education. Some also had educators who helped them receive scholarship to pursue college and graduate education. Others received financial support from their parents to continue their education, including the opportunity to receive education in English or in private schools. For them, education is the key to moving into a higher social class (see Antony, 2013; Rao and Kalyanpur, 2015), which is likely to provide access to better health care, disability services and employment opportunities, including positions at government offices.
These variations in the experiences of disability are informed by cultural markers such as highly structured social and gender hierarchies, as well as the Indian sociocultural-historical contexts that can marginalize individuals with disabilities, especially those from lower social class families (see Rao and Kalyanpur, 2015). Yet there also are similarities between India and other societies. For example, in the US, households with children with disabilities are more likely to experience poverty, which can delay access to necessary health care services (Ghosh and Parish, 2013).
Implications
This study, based on the voices of individuals with disabilities in India, has several implications for practice, policies, research, and theories. First, participants’ experiences of disabilities sensitize professionals, including those in Western countries, to stigmatization faced by people with disabilities. Participants’ narratives provide insights into structural challenges they have actually experienced, which convey powerful messages. Their voices also remind professionals of the importance of comprehensive services for individuals with disabilities. Disability services may be ineffective if professionals do not consider other sociocultural issues and sources of resilience that affect everyday experiences of individuals with disabilities. For example, unless underlying family issues, such as poverty, are solved, individuals with disabilities continue to struggle even if they receive services for their disabilities. Such challenges may be a universal concern across many cultures, including in Western countries (see Haight et al., 2013). Not only individuals with disabilities but also family members can benefit from services to enhance their resilience, which then consequently support individuals with disabilities.
Next, consistent with the existing literature (Chopra, 2013), participants’ discussion indicated the need for governmental support, both at the local and national levels, to minimize the gap between national disability policies and their local implementation in India. Although services provided at NGOs are available to compensate for inconsistent implementation of national policies (see Edwards, 1999; Government of India, 2016), not everyone can benefit from such services, especially in rural areas. Indeed, some participants moved to the urban city that served as our research site in order to receive vocational training. More support at the governmental level is necessary.
Finally, this report suggests implications for disability theories and research. As illustrated in this report, the challenges experienced by people with disabilities are not simply explained by either the medical model that considers individuals with disabilities as responsible for adjusting to the larger society, or the social model that seeks strategies to minimize challenges faced by individuals with disabilities, for instance, by removing social barriers (e.g. Goodley, 2013). Rather, individuals’ experiences have to be understood as the complex interaction of their disabilities, cultural beliefs, and general attitudes toward disability, and other sociocultural issues affecting their everyday experiences. A holistic and multi-layered examination of such interactions within their sociocultural contexts can provide an opportunity to develop culturally and stigma-sensitive strategies to support them, as well as contextualized policy and social interventions.
Another strength of this study is our insider perspective of disability. Researchers’ experiences of disability provide insights into the challenges experienced by participants. Although such perspectives may affect the interpretations of participants’ experiences, our professional knowledge and experience, as well as ethical standards, provide us with balanced insider and outsider perspectives of disability to critically examine our interpretations of participants’ experiences as insiders.
Limitations
This study has a number of limitations. First, the experiences of disability also vary by the age of onset, type, and severity of disability, as well as social status. This report may be over-simplifying participants’ experiences of disability by limiting our focus to three specific disabilities, including those with relatively milder disabilities. Furthermore, our sample does not include individuals from scheduled tribes or castes. It is necessary to examine the experiences of individuals with other, and/or severe disabilities, such as intellectual disabilities, and those from the most marginalized groups in India. Second, this study relies on interviews with participants who were not familiar with research conducted by university researchers. A few participants provided only limited information. Themes of stigma and resilience also emerged from the interviews. It is necessary to ask specifically about these themes to further discuss them, including the contribution of individual characteristics to their experiences of resilience and stigmatization. Finally, the analyses of interviews conducted in sign language had to rely on notes taken by the interviewer (S.L.). That said, she is an Indian scholar and has an insider perspective of disability, which served as safeguards to enhance credibility of our data.
Footnotes
Acknowledgements
The authors thank Garima Pundir and Sumitra Ramachandran for their help with data collection and preliminary analyses, and Wendy Haight for her helpful comments on an earlier draft of this article.
Funding
This study received funding through the Global Spotlight Major Award, University of Minnesota.
Notes
Author biographies
Misa Kayama, PhD, MSW is an Assistant Professor of Social Work at the University of Mississippi, USA. Her research focuses on cultural understandings of disability and stigmatization in the USA and Asian countries, including Japan, South Korea, Taiwan, and India, through qualitative, ethnographic approaches.
Christopher Johnstone is an Assistant Professor of Comparative and International Development Education at the University of Minnesota, Twin Cities, USA. His research focuses on inclusiveness as it relates to international development, K-12 education, and campus internationalization, including in Sub-Saharan Africa and South Asia.
Sandhya Limaye is an Associate Professor of Social Work and Disability Studies at Tata Institute of Social Sciences, Mumbai, India. She has received a number of fellowships, including Fulbright and Rockefeller Fellowships. Her research focuses on deaf culture, inclusive education, women with disabilities, and identity development.