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By Sadqua Khatoon
I. Introduction
Equality and inclusivity are fundamental principles that ensure all individuals, regardless of their abilities, have equal opportunities and rights. By embedding these principles in societal frameworks, we pave the way for a more just and cohesive society. Disability laws, such as the Americans with Disabilities Act (ADA)[1] and the United Nations Convention on the Rights of Persons with Disabilities (CRPD), are instrumental in achieving this inclusivity. These laws provide a legal framework to protect the rights of individuals with disabilities, ensuring access to education, employment, and public services. Scholars like Anna Lawson have extensively studied the impact of European Union non-discrimination laws and their intersectionality, highlighting their significance in dismantling barriers and promoting social justice.[2]
Disability studies play a pivotal role in fostering an inclusive society. By embracing diverse populations, whether able-bodied or those with physical or mental disabilities, the field contributes significantly to societal development. Recent trends in India include Accessible Digital Learning Platforms like the National Institute of Open Schooling and Policy Initiatives such as The Rights with Disabilities Act, 2016 emphasizes creating opportunities for individuals with disabilities in various educational fields, enabling them to contribute meaningfully. Understanding the methodologies of disability research is crucial for accelerating advancements by providing access to essential resources, including books, journals, and study materials, which are often lacking for people with disabilities.[3]
Disability studies, an interdisciplinary approach within the humanities and social sciences, explore disability through political, societal, and cultural lenses. Within this inclusive framework, disability studies accommodate diverse methodologies, spanning narratives of disability, disability in literature, arts, law, media, and more. Disrupting the conventional normal-abnormal binary, this discipline asserts that the spectrum of human variation is the true norm. Its origins trace back to the Disability Rights Movements of the 1960s in the United Kingdom.[4] Notably, the Union of the Physically Impaired Against Segregation (UPIAS) in the 1970s aimed to politicize disability issues, sparking further exploration by social scientists and scholars in arts and humanities.[5] However, significant challenges persist, including the underrepresentation of disabled researchers in academia and the portrayal of disabilities by able-bodied individuals.[6] Addressing these challenges requires a robust emphasis on fostering research in disability studies, aiming for valuable academic representation and the creation of a more inclusive society.
II. Methodological Complexities
In academic discourse, it is crucial to explore the multifaceted intersections of disability with other social categories and their representations across various media. The study of disability intersects with various fields, reflecting cultural representations and academic discourse. By examining works that highlight the intricate interplay between sexuality and disability, and understanding the different methodologies employed in disability studies, this analysis seeks to provide a comprehensive overview of how disabilities are represented in literature and other cultural texts. For instance, Waris Husain’s film “Sixth Happiness” (1997), based on Firdaus Kanga’s autobiographical novel “Trying to Grow,” explores multiple marginalizations, including post-colonial minority status, sexual minority, and disability.[7] Such works highlight the intricate interplay between sexuality and disability. It is noteworthy to see how sexuality and disability operate hand in hand. Anita Ghai quotes, “Male gaze makes normal women feel like passive objects, the stare turns the disabled object into a grotesque sight”.[8] Treatment of sexuality and disability differently further accelerates the silence between the two.
Given that the discipline of disability studies intersects with various other fields, there is a need for different sets of methodologies than those used in conventional disciplines. Research methodologies in disability studies encompass various approaches, including case studies, interviews, and emancipatory forms. A critical distinction exists between medical and individual models of disability, emphasizing the importance of care alongside cure.[9] Reflexive engagement with participants, ensuring their comfort and willingness to share accurate data, is paramount. The intersectionality of disability with other social categories like gender, race, and class enriches the research, providing deeper insights into the lived experiences of disabled individuals.[10] The evolution of literary studies from linguistic to cultural perspectives has influenced disability research, especially in the global south over the past two decades.[11]
Methodologies in disability research can be broadly categorized into two types: Disability in Literature, exploring how disabilities are represented in literature,[12] and Literature in Disability, examining how literature is created for individuals with disabilities.[13] Historical representations of disability in literature vary, reflecting societal attitudes of different epochs. For example, during the Renaissance, disabled individuals were often depicted as non-human,[14] while the Industrial Revolution period marked them as the antithesis of normalcy.[15] Contemporary approaches focus on narrative processes, aesthetic nervousness, disability aesthetics, and aesthetic blindness.[16] These frameworks help us understand how disability is portrayed in literary and cultural texts and how such portrayals influence societal perceptions. Narrative processes in disability studies look at how disability is often used metaphorically or as a plot device in literature, sometimes to the detriment of how disabled individuals are perceived.[17]
III. Methodological Constraints in Disability Law Research
In exploring disability studies, one encounters a nuanced landscape where perceptions of disability intertwine with aesthetic norms and qualitative research methodologies.
A. Aesthetic Nervousness and Disability Aesthetics
Aesthetic nervousness refers to the discomfort authors and readers may feel when engaging with disabled characters, reflecting societal stigmas.[18] Disability aesthetics, on the other hand, considers how disability can create an alternative form of beauty and artistic expression, challenging mainstream notions of aesthetics.[19]
B. Aesthetic Blindness
Aesthetic blindness critiques the exclusionary nature of aesthetic standards vision, prioritizing marginalizing blind individuals.[20] It emphasizes the importance of prioritizing and amplifying the voices and artistic contributions of blind individuals within broader aesthetic discourse.
C. Qualitative Research Approaches
Qualitative research in disability studies adopts a naturalistic approach, emphasizing understanding and interpretation.[21] Techniques include participant observation, in-depth interviews, documentary analysis, and case studies.[22]
D. Sampling Methods and Rigorous Practices
Sampling methods such as purposive, quota, and snowball sampling ensure comprehensive data collection.[23] Maintaining validity and rigour in qualitative research involves meticulous record-keeping, early writing initiation, the inclusion of primary and contrary data, and candid reporting.[24] These practices establish trust and ensure the authenticity of the research findings.
E. Anthropological and Emancipatory Perspectives
Anthropological perspectives reveal that disability definitions and perceptions vary significantly across cultures.[25] This cross-cultural understanding underscores the importance of contextualizing disability research to account for diverse experiences and social norms. Emancipatory research methodologies prioritize the involvement of disabled individuals in research and policy-making, ensuring their voices and experiences shape the discourse and outcomes.[26] This approach challenges traditional hierarchies in research, promoting a more equitable and inclusive academic environment.[27] Multiple factors such as social justice, personal experience, interdisciplinary interest, policy and advocacy, academic curiosity, community impact, cultural perspective etc. motivate researchers to delve into disability studies.[28]
F. Intersectionality and Practical Implications
A clear understanding of the area of study, including the intersection of disability with other social categories such as gender, caste, race, and class, is essential. For example, the experiences of a tribal woman with disabilities can differ vastly from those of an upper-class disabled woman. Researchers must navigate these complexities to produce meaningful and impactful studies. Research in disability studies also addresses practical aspects, such as developing new technologies, laws, policies, educational practices, employment opportunities, and social welfare systems.
G. Funding and Future Directions
Public and private sector funding is crucial for advancing disability studies and supporting initiatives aimed at improving legal frameworks, educational opportunities, and societal inclusion for disabled individuals.
IV. Inclusive Education and Legal Framework for Disability in India
Teaching disability studies in schools and colleges can enhance visibility and accessibility, fostering a more inclusive society from a young age. Validity and rigour are maintained through meticulous documentation, early writing, the inclusion of primary data, and candid reporting of findings. Justice Sikri’s remarks on the lack of resources for disabled individuals in the education system underscore the urgent need for systemic changes to support this population.[29] The qualitative approach in disability research focuses on understanding the subjective experiences of disabled individuals.[30] Techniques such as simple observation, participant observation, in-depth interviews, and documentary analysis allow researchers to gather rich, detailed data.[31] Qualitative Research in Disability studies faces several constraints. Sample selection is complicated by access issues, privacy concerns, and recruitment bias. Achieving diversity is challenging due to the varied nature of disabilities and intersecting demographic factors. Communication barriers and ethical issues, such as informed consent and privacy, complicate data collection. Data analysis is subjective and resource-intensive, with risks of researcher bias. Practical constraints include logistical issues ensuring accessibility, geographical barriers, and limited funding. Despite these challenges, qualitative methods are essential for capturing the experiences of disabled individuals, requiring careful planning and ethical consideration. Case studies provide comprehensive insights into individual or group experiences, while focus group discussions capture the perspectives of specific sub-groups Cases like Eera Kumar[32] emphasize the importance of interpreting laws in spirit rather than letters, advocating for emancipation, liberation, and societal acceptance of individuals with disabilities. The apex court ruled that an adult with the mental age of a child cannot be considered a victim under the Protection of Children from Sexual Offences (POCSO) Act. The case involved a 38-year-old woman with the mental age of a 6–8-year-old, and it was contended that the accused should be prosecuted under the POCSO Act. The court dismissed the appeal, stating that the clear language of the POCSO Act does not permit its scope to be extended by the judiciary, as doing so would constitute judicial legislation.
The Indian legal scenario has historically taken disability issues lightly. For instance, the Constituent Assembly Debates mentioned the unsound mind concerning voting and public office holding, reflecting a pathologizing view of disability.[33] The Indian Contract Act, of 1872 makes the distinction between lunatic and idiot. Section 3(3) of the Rights of Persons with Disabilities (RPWD) ACT states “No person with disability shall be discriminated on the ground of disability unless it is shown that the impugned act or omission is a proportionate means of achieving a legitimate aim.” Article 41 of the Constitution, too mentions the right to work, to education and public access in certain cases including disablement. Likewise, Article 317(3)(c) of the constitution mentions that the President may by order remove from the office chairman or member of public service commission on the ground if they are unfit to continue in the office because of the infirmity of mind in office. Additionally, Schedule VII, Entry 9, State list mentions “Relief of the disabled and unemployable.” Furthermore, the Judges Inquiry Act, 1968 sections 3(5) and 3(6) disqualify the judge from holding office on the ground of physical and mental incapacity. Before concluding, it is imperative to acknowledge the challenges and opportunities in the current landscape of disability research. The methodological constraints in disability law research highlight the intricate balance needed between legal rigour and empathetic understanding. Scholars face obstacles like societal biases, cultural variations in disability perception, and evolving legal frameworks. A comprehensive approach both qualitative and quantitative methods, is necessary. Actively involving disabled individuals in the research process ensures their voices shape the agenda, fostering inclusivity. Interdisciplinary collaboration enriches research with diverse perspectives and innovative solutions. Committed to justice, equality, and respect, we can overcome these hurdles and pave the way for substantial societal change.
V. Conclusion
In conclusion, disability studies broaden the perspective from viewing disability merely as a medical condition to recognizing it as a political construction and cultural identity. The field’s interdisciplinary nature of the field draws connections between various domains, including art, literature, law, social sciences, and humanities. There is an urgent need for rigorous research and the provision of study materials to empower individuals with disabilities, transforming them into valuable assets for society. Overcoming traditional stereotypes and fostering an inclusive society will ultimately fulfil the constitutional promise of a dignified life for all, as enshrined under Article 21 of the Indian Constitution. By integrating disabled individuals into all facets of society and academia, we pave the way for a more just and equitable future.
References
[1] American with Disabilities Act 1990, as amended, U.S.Department of Justice Civil Rights Division.
[2] Anna Lawson and Dagmar Schiek, European Union Non-Discrimination Law and Intersectionality: Investigating the Triangle of Racial, Gender and Disability Discrimination (Routledge 2016).
[3] Rob Kitchin, The Researched Opinions on Research: Disabled People and Disability Research (2010) 15(1) < Disability & Society https://www.tandfonline.com/doi/abs/10.1080/09687590025757> accessed on 15 July 2024.
[4] Brooke L Jones, ‘Emergence of the Disability Rights Movement’ (Research Paper, George Mason University 2017) <https://www.researchgate.net/publication/326148010_Emergence_of_the_Disability_Rights_Movement> accessed on 15 July 2024.
[5] ‘Union of the Physically Impaired Against Segregation’ (University of Leeds) <https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/UPIAS-UPIAS.pdf> accessed on 1 July 2024.
[6] Aleksandra (Sasha) Kosanic, ‘Researchers with Disabilities and the Obstacles They Face in Academia’ (Research Paper, Liverpool John Moores University 2018) <https://www.researchgate.net/publication/322519664_Researchers_with_Disabilities_and_the_Obstacles_They_Face_in_Academia> accessed on 15 July 2024.
[7] Mahika Banerji, ‘Sixth Happiness Film: Disability and Sexuality are not Mutually Exclusive’ (18 Dec 2017, Feminism in India) <https://feminisminindia.com/2017/12/18/sixth-happiness-film-review/> accessed on 1 July 2024.
[8] Anita Ghai, ‘Disabled Women: An Excluded Agenda of Indian Feminism (2002) 17(3) Hypatia 49.
[9] Mary Romero and Eric Margolis, The Blackwell Companion to Social Inequalities (Blackwell Publishing Ltd 2005).
[10] David I. Hernández- Saca, et. al., ‘Intersectionality Dis/ability Research: How Dis/ability Research in Educatiom Engages Intersectionality to Uncover the Multidimensional Construction of Dis/ abled Experiences (2018) 42 (1) Review of Research in Education <https://journals.sagepub.com/doi/abs/10.3102/0091732X18762439> accessed on 18 July 2024.
[11] Aydin Bal, et. al., ‘Culture, Context, and Disability: A Systematic Literature Review of Cultural-Historical Activity Theory-Based Studies on the Teaching and Learning of Students with Disabilities’ (2021) 43(4) Review of Education, Pedagogy, and Cultural Studies <https://www.tandfonline.com/doi/full/10.1080/10714413.2020.1829312> accessed on 15 July 2024.
[12] David T. Mitchell and Sharon L. Snyder, Narrative Prosthesis: Disability and the Dependencies of Discourse (University of Michigan Press 2000).
[13] Alice Equestri, ‘Literature and Disability in the English Renaissance’ (2022) Oxford Research Encyclopaedia of Literature <https://doi.org/10.1093/acrefore/9780190201098.013.1317> accessed on 18 July 2024.
[14] Dr Susan Anderson, A Cultural History of Disability in the Renaissance (Bloomsbury Publishing 2022).
[15] Holmes, et.al., A Cultural History of Disability in the Long Nineteenth Century (Bloomsbury Publishing 2022).
[16] Ato Quayson, Aesthetic Nervousness Disability and the Crisis of Representation (New York, Columbia University Press 1893).
[17] David Mitchell and Sharon Snyder, ‘Narrative Prosthesis and the Materiality Metaphor’ in The Disability Studies Reader (2nd edn, Routledge 2006).
[18] Constituent Assembly Debates 1948.
[19] Joseph N Straus, Broken Beauty Musical Modernism and the Representation of Disability (Oxford University Press 2018).
[20] Caleb A. Berkemeier, ‘The Affirmation of Blindness: A Nietzschean Critique of Interpretations of Suffering from Disability’ (Dissertation, Kent State of University 2021) <https://www.proquest.com/openview/8016b36bc6548fa27a71d3a74fadc859/1?pq-origsite=gscholar&cbl=18750&diss=y> accessed on 8 July 2024.
[21] Tricia Niesz, et.al., ‘The Empowerment of People with Disabilities Through Qualitative Research’ (2008) 31 (1) Occupational Therapists in Work Rehabilitation and Ergonomics <https://content.iospress.com/articles/work/wor00793> accessed on 18 July 2024.
[22] ibid.
[23] Dean Whitehead and Lisa Whitehead, ‘Data Collection and Sampling in Qualitative Research’ in Nursing and Midwifery Research (Elsevier 2016).
[24] ibid.
[25] Russell P. Shuttleworth, ‘Stigma, Community, Ethnography: Joan Ablon’s Contribution to the Anthropology of Impairment- Disability’ (2004) 18(2) Medical Anthropology Quarterly <https://anthrosource.onlinelibrary.wiley.com/doi/abs/10.1525/maq.2004.18.2.139> accessed on 15 July 2024.
[26] Mario Biggeri, et.al., ‘Knowledge Production and Human Rights Enhancement: The Role of the Potentialities of Emancipatory Disability Research’ in Research Handbook on Disability Policy (Edward Elgar Publishing 2023).
[27] Len Barton, Emancipatory Research and Disabled People: Some Observations and Questions (2005) 57(3) Educational Review 317 <https://www.tandfonline.com/doi/abs/10.1080/00131910500149325> accessed on 15 July 2024.
[28] Vinay Suhalka, ‘Social Work in Disability Studies: Insights from Anthropology’ (2024) 4(1) Tata Institute of Social Science 31 <https://tiss.edu/uploads/files/TISS_Journal_June_2024_CTP_FOR_WEB.pdf> accessed on 15 July 2024.
[29] Bhavya Singh, ‘A Feminist Perspective on Justice is Essential, Particularly When Considering Justice For The Community Of People With Disabilities: Justice Ak Sikri’ (LiveLaw, 2023) <https://www.livelaw.in/top-stories/justice-arjan-kumar-sikri-speaks-mission-accessibility-annual-lecture-239987> accessed 1 July 2024.
[30] Bonnie O’ Day and Mary Killeen, ‘Research on the Lives of Person With Disabilities: The Emerging Importance of Qualitative Research Methodologies’ (2002) 13(1) Journal of Disability Policy Studies <https://journals.sagepub.com/doi/abs/10.1177/10442073020130010201> accessed on 18 July 2024.
[31] Natasha Mack, et.al., Qualitative Research Methods: A Data Collector’s Field Guide (Family Health International 2005) <https://web.mnstate.edu/robertsb/460/Qualitative%20Research%20A%20Data%20Collectors%20Field%20Guide%20(2).pdf> accessed on 18 July 2024.
[32] Ms. Eera Through Dr. Manjula Krippendorf v. State (Govt. of NCT of Delhi) and Anr.
[33] Ato Quayson, Aesthetic Nervousness Disability and the Crisis of Representation (2007, Columbia University Press).
Sadqua Khatoon is a law student at Aligarh Muslim University, India.
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