Encountering Stigma in Special Education Research

Nov 27, 2023 | The Fieldwork Diaries

In the beginning, I kept the details of my work hidden from my parents. I was certain that if they discovered that I was working on a research project about children with disabilities, they would either question my choice or urge me to abandon it. In Pakistan, individuals with disabilities are unfortunately often stigmatized and viewed as a marginalized segment of society, living very different lives in comparison to people without disabilities. The associated social stigma is so pervasive that it extends even to those who work to support these individuals in integrating with mainstream society. This blog captures my experiences conducting fieldwork involving children and adults with disabilities, and the various stakeholders they interact with while attaining their education through state and private service providers.

The Disability in Education project housed at IDEAS aims to explore the lived realities and challenges of children with disabilities and their parents, caregivers, and teachers. For this qualitative study led by Dr. Faisal Bari, we have conducted more than 170 interviews of people with disabilities, their parents, teachers, and caregivers. As a qualitative researcher, I had the privilege of speaking with various non-profit organizations delivering quality education to children with disabilities.

Working in the field revealed that even the teachers and administration within the field of special education, especially in government institutes, upheld the belief that working with children with disabilities does not lead to any positive outcomes and is mostly not worth the effort. During visits to research sites in Lahore and Islamabad, the only question asked by every respondent either working with special children or related to them was “Why are you working on this project when you don’t have any loved one suffering from disability?” I always find it hard to answer this, as words are not enough to explain the injustice and the suffering endured by these students. I am often met with inquisitive and puzzled looks from principals to teachers when I share that I am doing this research because I am interested in learning about people with disabilities and the challenges they face in Pakistan’s education system. Even then, their faces would communicate a lingering doubt, as if the sheer acknowledgment of an unjust reality is not reason enough to champion this cause.

These attitudes reflect the magnitude of the stigmatization of special education in our society. The expectation is that only those who are not capable and want to do social work opt to work in this sector. These perceptions are perpetuated even by individuals working within special education. These perceptions mirror societal attitudes toward disability. This research has revealed the general perception that persons with disabilities are “defective” or “incapable of functioning normally,” requiring pity and sympathy only. The assumption then follows that those working in this profession sympathize or provide their services for humanitarian benefit.

Children with disabilities have the right to participate in the community, and acceptance of their personhood is the first step in destigmatizing their right to gain quality education.

In a recent conversation with a teacher overseeing the cerebral palsy section at a special education center in Lahore, I inquired about the educational objectives she sets for her class. To my surprise, her response was rather disheartening. She explained, “I refrain from setting specific goals for them. These students are considered slow learners, and formal education isn’t suited for them. Moreover, observable progress is often limited, with parents sometimes sending them to school mainly for respite.” This revelation left me deeply unsettled. In contrast to this, I thought of how much progress other countries have made in this regard, with specific diagnoses for learning disabilities at early stages, along with teachers setting dedicated milestones to empower these children to navigate the world effectively.

Regrettably, this sentiment seems pervasive not only among teachers in government institutions but also in private special education centers and schools. They appear to withhold their efforts, convinced that these children would not exhibit substantial progress. These attitudes and perspectives among educators and administrators are deeply rooted in the historical treatment of special education within Pakistan’s educational framework. Policymakers have consistently approached special education through the lens of the medical model, attributing the challenges to the individual rather than acknowledging environmental and attitudinal barriers. This outlook is reflected in the terminology used in census surveys conducted in 1961, 1973, 1981, and 1998, which employed terms like ‘crippled’, ‘insane’, ‘mentally retarded’, and ‘deaf and dumb’. These terminologies reveal the prevailing mindset of policymakers towards these special children and their presentation on national forums. Source: Pakistan Bureau Of Statistics Government of Punjab

Source: Pakistan Bureau Of Statistics Government of Punjab

Just by observing the first row in these pictures, one can see the use of very regressive terminology (up until recently) to represent or identify these children and adults as “crippled”, or “mentally retarded”. These terminologies played a benchmark in labeling them and questioning their personhood, which further perpetuates the societal stigma towards them. Children with disabilities have the right to participate in the community, and acceptance of their personhood is the first step in destigmatizing their right to gain quality education. The reactions of professionals associated with special education makes me ponder: is this stigma a result of ignorance? And if so, why do even those educated in esteemed institutions that foster diversity and tolerance still hold onto these misconceptions? Or could it be a deeper issue, a societal endorsement of Social Darwinism, a belief that those differently abled are somehow a flaw in the tapestry of human perfection?

When I finally got around to sharing with my parents, their reaction was just as I anticipated: they questioned me by asking why I was wasting my time while working with ‘mazoor’ and ‘gongy- bahrey bacha’. They consider it as a waste of time because, for them, it is impossible to fathom that I would work in special education after attaining education and marketable skills. At a family gathering, my uncle, an influential government official with over four decades of work experience, casually remarked, “In today’s world, nobody values your work; it’s useless to do social work specifically for special kids. Because these children don’t show any progress, they are God’s trial for their families.” This shattered me, his words were a sharp blow, as one would expect someone to understand the significance of this work who had overseen numerous social welfare departments.

Even among my university friends, post-graduation discussions focus on career achievements, paychecks, and recent projects we are working on. In one such talk, a friend asked about my work in the education sector. I explained my research on disability in education, sharing heart-wrenching stories from the field. He questioned why, as a LUMS graduate, I was engaged in charity work and how would I build a career from it. Expressing concern, he advised that I should focus on my future because there is no good return on this work. This unexpected reaction, contrary to my assumption about my family’s awareness, was disheartening. These experiences revealed a pervasive societal outlook that extends beyond mere lack of awareness towards special education and is rooted in its derogatory representation.

While discussing the ongoing issues in Pakistan’s education system, Article 25-A often comes up, emphasizing every child’s right to receive a quality education. However, in the case of children with disabilities, not only is Article 25-A being disregarded, but also Articles 26 and 27, which respectively ensure non-discrimination in accessing public places and protection against discrimination in service provision. The silence on the violation of these rights indicates the alarming situation regarding the provision of basic human rights in Pakistan. To extend these rights to children with disabilities, societal perceptions that view children with disabilities as fragile, broken, and dependent on society to function normally will have to be challenged.

Sajila Fatima is a Research Assistant on the Disability and Education project at the Institute of Development & Economic Alternatives. She is passionate about working on accessible quality education for all, with a focus on disability and social justice.