Indian Journal of Medical Ethics

COMMENT

Reintroducing differences linguistically!

Abha Khetarpal, Satendra Singh

DOI: https://doi.org/10.20529/IJME.2016.045

Published online: April 29, 2016


Abstract

Different models have defined the term disability and grouped persons with disabilities accordingly. Time and again, various terms and phrases have been used in different languages to identity persons according to the differences in their bodies and the level of functioning of those bodies. Analogies and metaphors create stereotypes and can affect the formation of an individual’s self-concept. Clichés like “divyang”, ie one who has some divine powers to compensate for the deficiency in the body, based on the supercrip theory of disability, can distort the self-concept and hamper identity formation. Society and the state cannot and must not shrug off their responsibility by using such sugar-coated terms to label individuals. The real requirement is the creation of a nondisabling environment and the provision of equal opportunities to those with disabilities rather than coining of new terms.

Introduction

Different kinds of phraseology have been used to delimit persons with disabilities. The terms used range from ‘”kubra” (hump-backed)’, “surdas” or “andha” (blind) and “specially abled” to “handicapped”, with the commonality that all such terminology has been chosen by non-disabled people (1). In structuring and framing the figurative language of disability, various alternative thoughts and feedbacks have been seen, not only challenging but also competing with each other.

On the basis of different models, persons with disabilities have remained deeply contested identities. There has been a tug of war between medically, socially and culturally controlled differences. However, the differences have always been due mainly to our bodies as our bodies are deemed to determine the success or failure of our full potential and independence.

The medical model pivots around the body and its malfunctioning, and its aim is to find a cure for it. It conforms to the notion that disability originates from physical and mental limitations. It lays more stress on the role of medical and healthcare professionals in the process of rehabilitation. The “problem” lies with the individual and what he/she can or cannot do. The medical model does not distinguish between illness, disease and disability. According to it, a disabled person is always sick or abnormal and waiting for treatment to be considered fully “normal”. This model thus results in the development of a kind of inferiority complex in the individual and instils a poor body image and distorted sense of self (1).

On the one hand, the moral model looks at disability as a punishment meted out to individuals or their family due to some sin or immoral acts committed by them, or sometimes disability is seen as the result of the presence of some evil spirits inside a person. On the other hand, the Tragedy/Charity Model presents a disabled person as a sufferer or casualty who must be pitied and sympathised with, resulting in the development of a paternalistic attitude towards the person (2). Most non-disabled people rely on this and the medical model to define disability.

The social model includes not just people with physical limitations, but also people with sensory and learning disabilities and mental health problems (3). Barriers of all kinds, whether they are built in the environment or whether they are the attitudinal barriers imposed by society, prevent their full inclusion (4). Disability thus is viewed through a sociopolitical construct falling within the rights-based approach.

The word “vikalang” means “imperfect limb”, which essentially means “deformed” or “impaired” and not “impediment” (5). Disability does not mean inability. People have impairments but it is society which makes them disabled with its physical and attitudinal barriers. The United Nations Convention on the Rights of Persons with Disabilities (6), which India ratified in 2007, also distinguishes impairment from disability:

Persons with disabilities include those who have longterm 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.

Various models that conceptualise disability have contradictory effects. Though charities offer essential services, they snatch away the individuality, self-determination and even the human rights of the disabled.

Clichéd, symbolic or token representations of disability

Language is a powerful instrument that can mould our thoughts even about ourselves, our near ones and the world in which we dwell. Phrases, clichés and anecdotes are used to describe identities. Quite often, “disability” is used in an analogy and many times in metaphors, not just for the exclusion of these people and a subsequent sense of triumph, but also because these garbs and themes are easier to swallow. The phrases and anecdotes work towards objectifying disabled persons, and converting them into lessons, learning experiences and something that carries hidden messages, rather than viewing them as human beings with their own desires, needs, aims and goals.

Literature and the media adopt these words extravagantly to create an atmosphere or sometimes just for blatant symbolism. A multitude of such instances can be highlighted in Indian literature and the media that have been successful in establishing paternalistic power relations chaining those with disabilities and that express disability as a liability. Hindu mythology and Hindi literary works, too, have been a bastion for the misinterpretation of disability. Very often, we come across a language of disability in literary work; we often find surprise being referred to as paralysing, fear as crippling, ignorance as blindness, or capitalism as cancer (7). Persons with deformities have been shown to portray evil characters like Shakuni in the Mahabharat or Manthara in the Ramayana. Numerous poets and writers in India have used disability to produce an element of satire in their works. One of the quotes in the collection of quotes by Chanakya, the ancient Indian thinker, teacher and economist, is, “He who does not see action is blind.” Here, the word blind is not used to describe a person who cannot see, but to evoke the meaning of darkness. In a collection of satirical stories/essays, Viklang Shradha ka Daur, written by Harishankar Parsai (8), the word “viklang” is used to satirise the system to convey that it has become nonfunctional.

The media, whether electronic or print, is the main source of transmitting information concerning social attitudes and Indian culture relies heavily on the media. The impact of the media on society extends through a trickling effect to the political sector. Indian cinema is one platform of the media which is a significant means of transmitting social attitudes in our country. Films have always played an important role in shaping identities in our country, especially in the absence of much face-to-face interaction with people with disabilities. Cinema’s social impact is reflected in the way censorship operates in India since it is considered an important medium of communication and cuts across all divides of class, and has a great ability to influence the masses. Various films place disability in the domain of social power relations that remain within the discursive structure of pity, heroism or imperfection (9).

The print media in India is also replete with illustrations of disability being used as a metaphor or a means of degrading and mudslinging. Politicians (10), even prime ministers and presidential candidates (11), have frequently used disability as abuse.

Generally, metaphors depend on a shared understanding of a perception. Such analogies can be made only because people hold rigid beliefs about a condition.

People very commonly call something or someone “retarded” or “spastic”, but no one would probably dare to use the word “gay”.

It may be noted that the conventional metaphors are processed as categorisations. The mindset behind referring to disability as a metaphor is that disabled bodies are considered shattered, worthless, useless, clumsy or less valuable. According to the figurative import of these metaphors, disabled people are invisible, and they are thus cut off from the mainstream. The metaphors not only undermine the disability civil rights movement, but also fail to recognise disabled people as full participants in conversations on intersecting identities, power, the body, etc.

Divyang: a cliché born out of ableism

The most recent label for persons with disabilities in India is “divyang” or one whose body has some angelic powers. On hearing this word, persons with disability now feel that their “humanisation” is trapped in metaphysical conceptions of disability.

In his “Mann ki Baat” radio address, the Prime Minister said: “We see a person’s disability with our eyes. But our interaction tells us the person has an extra power. Then I thought, in our country, instead of using the word ‘viklang’, we should use the term ‘divyang’. These are people who have a limb or several limbs with divine powers which we don’t have.” (12) In his speech in Varanasi, he said, “We see with the eyes, but a ‘prgyackshu’ (one who has a learned eyesight), ie a person with visual impairment reads Braille with his finger, and this very finger is his ‘divyang’ or the body part that has extraordinary quality. God has given him divinity. That divinity has developed him. So when I talk about the disabled I want to address them as ‘divyang’. So when we meet these people, we will not view what is lacking in them; we will see what extraordinary quality they possess.” (13).

Born out of ableism and based on the impairment model, the word ‘divyang’ derives its strength from the supercrip theory. It is set within the contours of the medical, charity and moral models. The implication is that persons with disabilities automatically get converted into a “human–angel hybrid”. Instead of viewing a person affected by a disability or illness as helpless, tragic and powerless, the “supercrip” model views him /her as a hero who is active and independent if he/she is able to “overcome” the disability, succeed as a meaningful member of society and live a “normal” life”. Though this is a positive representation, it perpetuates the discourse of negativity. Through its language, on the one hand, it reinforces the low societal expectations of people with disabilities and, on the other, it establishes the standard that all people with disabilities should be able to achieve similar victories as those of the disabled hero. It risks further separation of people with disabilities by singling them out for their disabilities.

This model is a relentless effort to explore disability as “heroic by hype”. It is a product of the belief that living with a disability is something very tragic and difficult, and so persons with disabilities must be applauded for being brave while coping and living with a smile on their faces. They must be seen as “heroes” and “soldiers”, and must be admired for their “courage” and determination. It is about placing persons with disabilities on a pedestal, denoting this social group as “other”. Such a stereotype is also related to the idea that disability in one area is compensated by some abilities in another area. For instance, polio survivors have always heard that “people like us are always intelligent”. It is as if the polio virus inside the body has changed the IQ level.

By proposing that disability is divine or angelic, how would society ever know the actuality of disability – those realities of which some are bitter, grim, and distressing? Emphasising that disability is a separate category lets people remain unbothered about their attitudes and about maintaining inaccessibility in society. Since our country is a so-called “welfare state”, the only way out is politicised state rescue of the disabled in the form of reservation and quotas in employment markets and educational institutions.

Since they are precious angels with “extraordinary powers”, the disabled do not require the same public access as everyone else. They need to be kept in an infantile state, not being allowed to grow up, and so they do not require education. They do not need to live independently or interdependently and do not need to be financially independent. The meagre financial benefits granted them by the government would be sufficient for them to survive and live on the margins, so they do not need gainful employment opportunities. This approach to disability suggests that these people must be admired, patted and talked about, but that they do not need to be addressed.

Psychological dimension

Carl Jung once said, “Thinking is difficult. That is why most people judge.” (14) And this is the phenomenon that disabled persons face every time they interact with their non-disabled counterparts. Descriptions of them never remain valuefree; they have mostly been judgmental, saturated with performative constraints, and highly influenced by the ableist culture. When stories about the lives of persons with disabilities are told, they are either distorted by bizarre portrayals or replete with idyllic instances and superhuman feats. An encounter with disability becomes a cause for amazement, surprise and commotion, which elicits the curiosity of passersby. There is a continuous urge to stare and the ablest gaze is always present to note differences between bodies.

Since time immemorial, differences between bodies – some divine, some not so divine; some deformed; some black and some white – have regulated the structuring of society by the establishment of norms, and the categorisation of those who fall outside it as “other”. The greater the degree of variation, the greater is the feeling of that “otherness”.

A discourse that exemplifies and typifies disability leads to objectification of persons with disabilities just to get inspired by them. Inspiration porn is an image of a person with disability doing ordinary things in their daily lives like bathing, grooming, eating, playing etc and yet applauded for it as if they have done something heroic. We must never forget that inspiration porn simply substitutes one stereotype – the pitiful victim – for another – the inspiring hero (15). Inspiration porn objectifies people with disabilities by pointing out and displaying their physical differences. It consoles the nondisabled population by holding that when “these people” with their limited resources can achieve so much, then those who consider themselves “normal” can do much more. Persons with disabilities then become “mascots of motivation” to give the non-doers a kick on the back.

All this has made the disabled stand as an isolated group, as “the other” outside “normal” society. Among disabled people, people who regard themselves as non-disabled always try to show who they are not. Imagery and cultural representations have the potential to sustain the psycho-emotional pathways of oppression.

Words wield power; language and ideas have multiple effects. However, unfortunately, images and language (disability metaphors like divyang) like this are so routine that they are almost invisible. They are part of a system of images that are used to talk about a situation of being powerless in the identity and cultural politics wars. It is very rare that we avoid them, sometimes in the name of principles and sometimes only in the name of civility.

Metaphorical tagging creates experiential and emotional links for others. It is an effort to move from the known to the unknown in thoughts and feelings. It is true that emotions are one of the legitimate ways of knowing things. However, our responsibility arises while making emotional connections with the audience; we must not ignore the literal value. If we ignore the meaning, then we choose to remain oblivious to the physical, psychological, sensory and emotional experiences that come with these linguistic experiments. Intentionally or unintentionally, we create a negative rhetorical scenario all around. Hidden deep beneath the layers of our psyche, the motive behind deploying these kinds of strategically constructed labels is to stress the value of the existence of socalled “able-bodiedness”.

The portrayals of images related to persons with disabilities showing triumph over personal tragedy, or “overcoming the odds” with some divine powers in the body, are liable to make popular culture remain in a dilemma over machoism and cowboyism and taking over the world even in times of adversity. Alternatively, the disabled are often portrayed as reflecting the “suffering Christ”

Putting people in slots and treating them as a bulk phenomenon is bound to create an unnatural prototype of mankind to which some of us may adapt easily, while many of us may feel repressed and boycotted. Those who are left outside such a criterion of humanity remain at the risk of feeling isolated and discriminated against.

Identity formation

Identity is “the condition of being a person and the process by which we become a person, that is, how we are constituted as subjects” (16).

Identity is formed at the personal as well as societal levels. However, it is the most empowering when personal experiences are asserted and self-described. On the other hand, when it is socially ascribed by formal organisations and structures, it becomes disempowering.

Unless a coherent disability identity is formed, individuals will not be able to adapt to their disability and cope up with social stresses, as well as day-to-day hassles. Noticeable components of the self-concept are formed only after shaping of the personal identity. The identity of people with disabilities should encompass pertinent objectives associated with disability. There should not be a separation from their self.

Disability identity must lead them towards what can be done, what must be valued and how to act in situations in which their disability is highlighted. It must dispose the person to accept, adjust and acknowledge his/her own identity. By incorporating disability in one’s identity, one would be successfully able to advocate for one’s inclusion in society by having the same rights and responsibilities as other citizens, and stand up and seek recognition and treatment on par with others (17).

Lack of self-esteem can make people think negatively and demotivate them. Having a distorted perception of one’s selfefficacy can render one unproductive and inefficient. Negative self-expression may be the result of an unstable self-concept. Gaps between the actual and ideal self-concepts can be the root cause of depression, stress or anxiety. The performance or the behaviour of an individual is liable to be altered if he/she suffers from an identity crisis. It may have an adverse effect on his/her traits, competencies and values. The personal and economic costs of a distorted personality tend to be very high, while those who have high self-esteem have productive organisational traits.

The cliché/metaphor “divyang”, if systemically incorporated into societal structures, could push persons with disabilities to buy the idea that they are some kind of exception that allows them to be superior, as if they have achieved something. The use of such words would deeply embed the thought that people without disabilities are “normal” and those with disabilities are different.

Considering themselves to possess some divine powers, they would shun other people with disabilities or deny themselves the accommodations required to carry on with their day-to-day activities. All this could distort the formation of their identity by introducing an element of confusion and initiating a kind of psychological warfare in their minds about who they actually are. Their disability would become at once a source of pride as well as scorn. It would simultaneously become a stimulus for empowerment and a source of pain (18). Their selfesteem and self-advocacy could suffer and they might distance themselves from the disability rights movement altogether. They might develop a tunnel vision and ignore the needs of other disabled people whose self-identities are different from theirs. Carried away by such titillating terms, some may even try to succeed at levels higher than their peers without disabilities by pushing themselves more than required to overcome obstacles, in the process making themselves lead a life that is completely harrying and stressful (19).

Bodies that are defined in a way that categorizes them or separates them from what is considered ‘normal’ may become elements that would require moulding or improving them so that they may get accepted by others. This definition and attitude could mitigate their humanity by converting them into objects of curiosity (20). The divyang approach does not identify “the disabled” as an individual entity. According to it, a person with a disability has no identity or uniqueness and everyone in the category “struggles” for rehabilitation. To do so, he/she must overcompensate and become superhuman to be accepted by society.

And by what name should persons with intellectual disabilities be called then? Where do they stand? Which part of their bodies would be considered divyang?

If a person with disability internalises ableism, he would be at a risk of constantly denying his reality. He would not be able to accept his condition if his body is considered deformed and defined accordingly. He would tire himself in a frustrating way by waiting for miracles to happen. He would always find himself standing in reserve when the efforts of technological improvement of his “anomalous” body prove futile. No one can “know” about one’s existence without being rooted in one’s body or without accepting and acknowledging the real self.

Actual need of the hour

It is important to evoke emotions to bring social change, but not to the extent of creating a melodrama about the whole thing. Labels, cliché and metaphors might be useful in political writing and social commentary. It must not be forgotten that if a culture’s language contains disapproving metaphors about certain people, then that culture is probably not geared up to fully entitle the group left out on the periphery to equitable employment, medical care, education, access and inclusion.

Rhetoric has the potential to shape the way disability is understood and informs its political implications. Disability is a loaded term sanctioned by culture (21). Since the social model of disability holds the society and the environment responsible for creating inaccessible conditions, derogatory words and language further disable them.

The differences between various discourses come from the apparent intent of each, and the sphere in which they are activated. Discourses such as the one on divyang formulate substantial and emblematic fields of power into which the object of a discourse, ie a disabled person, is placed (22). The word as well as its approach focuses on piling together groups of people with impairment, for example, “the blind” or “epileptics”. Society unintentionally and often unconsciously starts collecting bits and pieces of information about one such social group. Consequently, everybody develops a “schema” or a quick shortcut reference for it, without caring for diversity and differences, completely ignoring individualism. It conditions people to perceive of the disabled as a homogeneous group of individuals. The intent here is to emotionally appeal to the members of society and make disability a subject of charity.

The fundamental ethical issue here is how we value different individuals, ie by using a discourse that separates and makes them feel excluded or by treating them as individuals in an inclusive society. The language that labels and stigmatises must be regarded as unethical as it degrades and dehumanises. This perpetuates stigma and stereotypes. It tends to worsen the internal difficulties that individuals with disabilities face in asserting their innate potential. The nomenclature sees disability as a personal tragedy and something that is within the body. It ignores the fact that the environment and attitudes of others accentuate the disabling conditions. It excludes many individuals with disabilities from mainstream contexts. According to it, disability is something that has to be “overcome” at all costs.

A language that demeans and isolates can never be ethically correct. Culture, language and social behaviour are not only interrelated, but are also interdependent. Thus ethical use of disability language is of prime importance. Cultural and linguistic competence are extremely important and it is essential for everyone to embrace diversity. Instead of wasting time on finding new terms and meanings, theoretical and cultural producers should engage in the more meaningful activity of concentrating on understanding the lives of human beings living on the periphery.

Persons with disabilities are not a bunch of just paralysed legs, deaf ears or blind eyes. They are individuals who are whole, living, breathing human beings. No one has the right to put their bodies into the service of inspiring the world without their consent.

Persons with disabilities do not need stereotypes that risk turning a complex phenomenon into trite definitions. Instead, concrete solutions to problems like inequality, injustice and discrimination are required. Equal opportunities should be provided to the disabled via legislation, and they should be equipped with an inclusive and accessible environment so that they are not left uneducated and unemployed. This would be far better than glossing over the real problem with glamorised terms and instilling inappropriate emotions in the minds of people. There is a need to create a conducive atmosphere in which the disabled can become active makers of meaning rather than passive specimens of display. We do not need sensationalisation of disability; we need sensitisation.

References

  1. Singh S, Gupta P. Persons with disabilities. In: Gupta P, Khan AM (eds). Textbook of community medicine. New Delhi: CBS publishers; 2016, p.546.
  2. Jarman M. Disability studies ethics: Theoretical approaches for the undergraduate classroom. Review of Disability Studies: An International Journal. 2014 Nov 24;4(4).
  3. Bampi LN, Guilhem D, Alves ED. Social model: a new approach of the disability theme. Rev Lat Am Enfermagem. 2010;18(4):816-23.
  4. Shakespeare T. Facing up to disability. Community Eye Health. 2013;26(81):1-3.
  5. Raja K. The ethics of disability language. Indian J Med Ethics. 2013;10(1):68-9.
  6. United Nations Convention on the Rights of Persons with Disabilities. United Nations Enable [website]. New York: United Nations; 2006 [cited 2016 Feb 16]. Available from: http://www.un.org/disabilities/default.asp?id=259
  7. Schick E. Ableism in metaphor. Did I stutter? [Internet] 2015 [cited 2016 Feb 16]. Available from: http://www.didistutter.org/blog/ableism-inmetaphor
  8. Parsai H. Vikalang shraddha ka daur. Rajkamal Prakashan Pvt Ltd; 2001. Hindi.
  9. Sawhney K. Tracing the portrayal of disability in Indian cinema [Internet] [cited 2016 Feb 29]. Available from: http://stanford.edu/~kartiks2/disabilityInBollywood.pdf
  10. Hindustan Live. Modi par bole lalu, Kalyugi dhritrhastra gunga aur bahra bhi [Internet] October 5, 2015 [cited 2016 Feb 29]. Hindi. Available from: http://www.livehindustan.com/news/bihar-election-latestnews/article1-lalu-prasad-BJP-narendra-modi-kalyugi-dhritarashtra-twitter-Amit-shah-498035.html
  11. Nagarajan R. When netas use disability as abuse. Times of India [Internet] April 20, 2014 [cited 2016 Feb 29]. Available from: http:// timesofindia.indiatimes.com/news/When-netas-use-disability-asabuse/ articleshow/33984270.cms
  12. Venugopal V. PM Narendra Modi suggests use of ‘divyang’ for persons with disability in his ‘Mann ki Baat’. Economic Times [Internet] December 27, 2015 [cited 2016 Feb 10]. Available from: http://articles.economictimes.indiatimes.com/2015-12-27/news/69334731_1_mannki-baat-pm-narendra-modi-disability-affairs
  13. Text of PM’s speech at Samajik Adhikarita Shivir for distribution of aids and assistive devices in Varanasi. Prime Minister of India [Internet] January 22, 2016 [cited 2016 Feb 10]. Available from: http://pmindia.gov.in/en/news_updates/text-of-pms-speech-at-samajik-adhikaritashivir- for-distribution-of-aids-and-assistive-devices-in-varanasi-22-01-2016/?comment=disable
  14. MacLeod AK, Tarbuck AF. Explaining why negative events will happen to oneself: parasuicides are pessimistic because they can’t see any reason not to be. Br J Clin Psychol. 1994;33(Pt 3):317-26.
  15. Serlin D. Constructing autonomy: smart homes for disabled veterans and the politics of normative citizenship. Critical Military Studies. 2015;1(1):38-46. doi:10.1080/23337486.2015.1005392
  16. Kidd W. Culture and identity: skill-sociology. New York: Palgrave and Macmillan; 2001.
  17. Dunn DS, Burcaw S. Disability identity: exploring narrative accounts of disability. Rehabil Psychol. 2013;58(2):148-57. doi: 10.1037/a0031691. Epub 2013 Feb 25.
  18. Fleisher DZ, Zames F. The disability rights movement: From charity to confrontation. Philadelphia: Temple University Press; 2001.
  19. Smith P. Whiteness, normal theory, and disability studies. Disabil Stud Q. 2004:24;2. doi: http://dx.doi.org/10.18061/dsq.v24i2.491
  20. Campbell FK. Refusing able(ness): a preliminary conversation about ableism. Media and Culture. 2008;11:3 [cited 2016 April 11]. Available from: http://journal.media-culture.org.au/index.php/mcjournal/article/viewArticle/46
  21. Cherney JL. The rhetoric of ableism. Disabil Stud Q. 2011;31:3.
  22. Hayes MT, Black RS. Troubling signs: disability, Hollywood movies and the construction of a discourse of pity. Disabil Stud Q. 2003;23(2):114-32.