Abstract

Existing historical understandings of disability are dominated by European and American

experience and tend to assume Judeo‐Christian ideas of stigma and exclusion are universal
norms. This paper emphasises the unique experience of disability in India and the role of
poverty, gender, caste and community in compounding the marginalisation felt by people
with disabilities. It argues, with Kudlick, that ‘disability’ is as important as ‘race’ or ‘gender’
as an analytic tool in the historical understanding of oppression and disempowerment.
Moreover, the paper sees reclaiming history and insisting on inclusion of the experience of
disability in the writing of Indian history as a critical factor in affirming the right of Indians
with disabilities to full social and economic participation. Finally it emphasises the need for
‘disability history’ to look beyond colonial and post‐colonial welfare paradigms and to
investigate disability as an aspect of rights based history.
 Chapter 1

Introduction

What is disability?
A disability is any condition of the body or mind (impairment) that makes it more difficult for
the person with the condition to do certain activities (activity limitation) and interact with the
world around them (participation restrictions).
There are many types of disabilities, such as those that affect a person’s:
• Vision
• Movement
• Thinking
• Remembering
• Learning
• Communicating
• Hearing
• Mental health
• Social relationships
Although “people with disabilities” sometimes refers to a single population, this is actually a
diverse group of people with a wide range of needs. Two people with the same type of
disability can be affected in very different ways. Some disabilities may be hidden or not easy
to see.
According to the World Health Organization, disability has three dimensions:1
1. Impairment in a person’s body structure or function, or mental functioning;
examples of impairments include loss of a limb, loss of vision or memory loss.
2. Activity limitation, such as difficulty seeing, hearing, walking, or problem solving.
3. Participation restrictions in normal daily activities, such as working, engaging in
social and recreational activities, and obtaining health care and preventive services.
Disability can be:
• Related to conditions that are present at birth and may affect functions later in life,
including cognition (memory, learning, and understanding), mobility (moving around
in the environment), vision, hearing, behavior, and other areas. These conditions may
be
• Disorders in single genes (for example, Duchenne muscular dystrophy);
• Disorders of chromosomes (for example, Down syndrome); and
• The result of the mother’s exposure during pregnancy to infections (for example,
rubella) or substances, such as alcohol or cigarettes.
• Associated with developmental conditions that become apparent during childhood
(for example, autism spectrum disorder and attention-deficit/hyperactivity disorder or
ADHD)
• Related to an injury (for example, traumatic brain injury or spinal cord injuryexternal
icon).
 • Associated with a longstanding condition (for example, diabetes), which can cause a
disability such as vision loss, nerve damage, or limb loss.
• Progressive (for example, muscular dystrophy), static (for example, limb loss), or
intermittent (for example, some forms of multiple sclerosis

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. ...
... 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). ...
... 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). ...
. against re-inscribing and heightening injustices through continued imposition of knowledge
and strategies generated in Western contexts (Buckingham, 2011;Hammell, 2011;Magalhães
et al., 2019). ...
... In some instances, attitudes and experiences of stigma combined with a lack of available
resources and the impossibility of 'curing' led to the institutionalization of children with
disabilities, an approach established through a historical colonial emphasis on a charitable
care model (Buckingham, 2011). For some parents, within existing structures, admission of
their children into a residential facility for children with disabilities became the best available
option, given restricted options for home support with limited resources and concerns
regarding safety. ...
... In turn, they longed for their children to have better access to education as means to
transform their situations of poverty. However, commensurate with Buckingham's (2011)
analysis of barriers to educational opportunities for children with disabilities in India, our
findings illustrate ways socio-political systems often failed to support the full inclusion of
children with disabilities in schools, often pushing children with disabilities to drop out of
school and, in turn, perpetuating the cycle of poverty. Thereby, socio-politically shaped
patterns of occupational 'choice' of children with disabilities further perpetuated social
inequalities (Galvaan, 2015).
Appropriate Terminology for Specific Disabilities
Listed below are preferred words that reflect a positive attitude in portraying disabilities:
Blind. Describes a condition in which a person has a loss of vision for ordinary life purposes.
Generally, anyone with less than 10% of normal vision would be regarded as legally blind.
Burn Injury. Describes damage to the skin which permanently alters its appearance. Rather
than say burn victim say burn survivor or person with a burn injury.
Deaf. Deafness refers to a profound degree of hearing loss that prevents understanding
speech though the ear. Hearing impaired and hearing loss are generic terms used by some
individuals to indicate any degree of hearing loss–from mild to profound. These terms
include people who are hard of hearing and deaf. However, some individuals completely
disfavor the term hearing impaired. Others prefer to use deaf or hard of hearing. Hard of
hearing refers to a mild to moderate hearing loss that may or may not be corrected with
amplification. Use woman who is deaf, boy who is hard of hearing, individuals or people
with hearing loss.
Disability. General term used for a functional limitation that interferes with a person's ability
for example, to walk, lift, hear, or learn. It may refer to a physical, sensory, or mental
condition. Use as a descriptive noun or adjective, such as person living with AIDS, woman
who is blind. or man with a disability. Impairment refers to loss or abnormality of an organ or
body mechanism, which may result in disability.
Handicap. Not a synonym for disability. Describes a condition or barrier imposed by society,
the environment, or by one's own self. Some individuals prefer inaccessible or not accessible
to describe social and environmental barriers. Handicap can be used when citing laws and
situations but should not be used to describe a disability. Do not refer to people with
disabilities as the handicapped or handicapped people. Say the building is not accessible for a
wheelchair-user. The stairs are a handicap for her.
Head injury. Describes a condition where there is long-term or temporary disruption in brain
functioning. Use persons with head injury, people who have sustained brain damage , woman
who has sustained traumatic brain injury, or boy with a closed head injury.
Mental Illness/Mental Disability. Describes a condition where there is loss of social and/or
vocational skills. Do not use mentally deranged, crazy, deviant. Mental disability describes
all of the recognized forms of mental illness, severe emotional disorder, or mental retardation.
Terms such as neurotic, psychotic, and schizophrenic should be reserved for technical
medical writing only. Use man with mental illness, woman with a mental disorder.
Non-disabled. Appropriate term for people without disabilities. The terms normal, able-
bodied, healthy, or whole are inappropriate.
Seizure. Describes an involuntary muscular contraction, a brief impairment or loss of
consciousness, etc. resulting from a neurological condition such as epilepsy or from an
acquired brain injury. Rather than epileptic, say girl with epilepsy or boy with a seizure
disorder. The term convulsion should be used only for seizures involving contraction of the
entire body.
Spastic. Describes a muscle with sudden abnormal and involuntary spasm. Not appropriate
for describing someone with cerebral palsy. Muscles are spastic, not people.
Special. Describes that which is different or uncommon about any person. Do not use to
describe person with disabilities. (Except when citing laws or regulations).
Specific Learning Disability. Describes a permanent condition that affects the way
individuals with average or above-average intelligence take in, retain and express
information. Specific is preferred, because it emphasizes that only certain learning processes
are affected.
Speech Disorder Describes a condition where a person has limited or difficult speech
patterns. Use child who has a speech disorder. For a person with no verbal speech capability,
use woman without speech. Do not use mute.
Spinal Cord Injury. Describes a condition where there has been permanent damage to the
spinal cord. Quadriplegia describes substantial or total loss of function in all four extremities.
Paraplegia refers to substantial ot total loss of function in the lower part of the body only. Say
man with paraplegia, woman who is paralyzed.
Visually Impaired is the generic term preferred by some individuals to refer to all degrees of
vision loss. Examples: boy who is blind, girl who is visually impaired, man who has low
vision.
Definition of Disability
According to The Rights of Persons with Disabilities Act, 2016
"Person with disability" means a person with long term physical, mental, intellectual or
sensory impairment which, in interaction with barriers, hinders his full and effective
participation in society equally with others.
"Person with benchmark disability" means a person with not less than forty per cent. of a
specified disability where specified disability has not been defined in measurable terms and
includes a person with disability where specified disability has been defined in measurable
terms, as certified by the certifying authority.
The 21 disabilities covered are as follows.
1. Blindness
2. Low-vision
3. Leprosy Cured persons
4. Hearing Impairment
5. Locomotor Disability
6. Dwarfism
7. Intellectual Disability
8. Mental Illness
9. Autism Spectrum Disorder
10. Cerebral Palsy
11. Muscular Dystrophy
12. Chronic Neurological conditions
13. Specific Learning Disabilities
14. Multiple Sclerosis
15. Speech and Language disability
16. Thalassemia
17. Hemophilia
18. Sickle cell disease
19. Multiple Disabilities including deaf-blindness
20. Acid Attack victims
21. Parkinson’s disease
Disability is the experience of any condition that makes it more difficult for a person to do
certain activities or have equitable access within a given society. Disabilities may be
cognitive, developmental, intellectual, mental, physical, sensory, or a combination of multiple
factors. Disabilities can be present from birth or can be acquired during a person's lifetime.
Historically, disabilities have only been recognized based on a narrow set of criteria—
however, disabilities are not binary and can be present in unique characteristics depending on
the individual.[1] A disability may be readily visible, or invisible in nature.
The United Nations Convention on the Rights of Persons with Disabilities defines disability
as:
long-term physical, mental, intellectual or sensory impairments which in interaction with
various barriers may hinder [a person's] full and effective participation in society on an equal
basis with others.[2]
Disabilities have been perceived differently throughout history, through a variety of different
theoretical lenses. There are two main models that attempt to explain disability in our society:
the medical model and the social model. The medical model serves as a theoretical
framework that considers disability as an undesirable medical condition that requires
specialized treatment. Those who ascribe to the medical model tend to focus on finding the
root causes of disabilities, as well as any cures—such as assistive technology. The social
model centers disability as a societally-created limitation on individuals who do not have the
same ability as the majority of the population. Although the medical model and social model
are the most common frames for disability, there are a multitude of other models that theorize
disability.
There are many different terms that exist to explain different aspects relating to disability.
While some terms solely exist to describe phenomena pertaining to disability, others have
been centered around stigmatizing and ostracizing those with disabilities. Some terms have
such a negative connotation that they are considered to be slurs. A current point of contention
is whether it is appropriate to use person-first language (i.e. person who is disabled) or
identity-first language (i.e. disabled person) when referring to disability and an individual.
Due to the marginalization of disabled people, there have been several activist causes that
push for equitable treatment and access in society. Disability activists have fought to receive
equal and equitable rights under the law—though there are still political issues that enable or
advance the oppression of disabled people. Although disability activism serves to dismantle
ableist systems, social norms relating to the perception of disabilities are often reinforced by
tropes used by the media. Since negative perceptions of disability are pervasive in modern
society, disabled people have turned to self-advocacy in an attempt to push back against their
marginalization. The recognition of disability as an identity that is experienced differently
based on the other multi-faceted identities of the individual is one often pointed out by
disabled self-advocates. The ostracization of disability from mainstream society has created
the opportunity for a disability culture to emerge. While disabled activists still promote the
integration of disabled people into mainstream society, several disabled-only spaces have
been created to foster a disability community—such as with art, social media, and sports.
History
Contemporary understandings of disability derive from concepts that arose during the
scientific Enlightenment in the west; prior to the Enlightenment, physical differences were
viewed through a different lens.[3]
There is evidence of humans during prehistory that looked after people with disabilities. At
the Windover Archeological Site, one of the skeletons that was found was a male about 15
years old, who had spina bifida. The condition meant that the boy, probably paralyzed below
the waist, was taken care of in a hunter-gatherer community.[4][5]
Disability was not viewed as a means of divine punishment and therefore disabled individuals
were neither exterminated nor discriminated against for their impairments. Many were
instead employed in different levels of Mesopotamian society including working in religious
temples as servants of the gods.[6]
In Ancient Egypt, staffs were frequently used in society. A common usage for them was for
older persons with disabilities to help them walk.[7]
Windover Archeological Site, location of the 15 year old with spina bifida who was taken
care of in a hunter-gather community.
Provisions that enabled individuals with impaired mobility to access temples and healing
sanctuaries were made in ancient Greece.[8] Specifically, by 370 B.C., at the most important
healing sanctuary in the wider area, the Sanctuary of Asclepius at Epidaurus, there were at
least 11 permanent stone ramps that provided access to mobility-impaired visitors to nine
different structures; evidence that people with disabilities were acknowledged and cared for,
at least partly, in ancient Greece.[9] In fact, the Ancient Greeks may not have viewed persons
with disability all that differently from more able-bodied individuals as terms describing them
in their records appear to be very vague. As long as the disabled person in question could still
contribute to society, the Greeks appeared to tolerate them.[10]
During the Middle Ages, madness and other conditions were thought to be caused by
demons. They were also thought to be part of the natural order, especially during and in the
fallout of the Black Death, which wrought impairments throughout the general population.[11]
In the early modern period there was a shift to seeking biological causes for physical and
mental differences, as well as heightened interest in demarcating categories: for example,
Ambroise Pare, in the sixteenth century, wrote of "monsters", "prodigies", and "the
maimed".[12] The European Enlightenment's emphases on knowledge derived from reason and
on the value of natural science to human progress helped spawn the birth of institutions and
associated knowledge systems that observed and categorized human beings; among these, the
ones significant to the development of today's concepts of disability were asylums, clinics,
and prisons.[11]
Contemporary concepts of disability are rooted in eighteenth- and nineteenth-century
developments. Foremost among these was the development of clinical medical discourse,
which made the human body visible as a thing to be manipulated, studied, and transformed.
These worked in tandem with scientific discourses that sought to classify and categorize and,
in so doing, became methods of normalization.[13]
The concept of the "norm" developed in this time period, and is signaled in the work of the
Belgian statistician, sociologist, mathematician, and astronomer Adolphe Quetelet, who
wrote in the 1830s of l'homme moyen – the average man. Quetelet postulated that one could
take the sum of all people's attributes in a given population (such as their height or weight)
and find their average and that this figure should serve as a statistical norm toward which all
should aspire.
This idea of the statistical norm threads through the rapid take-up of statistics gathering by
Britain, the United States, and the Western European states during this time period, and it is
tied to the rise of eugenics. Disability, as well as other concepts including: abnormal, non-
normal, and normalcy came from this.[14] The circulation of these concepts is evident in the
popularity of the freak show, where showmen profited from exhibiting people who deviated
from those norms.[15]
With the rise of eugenics in the latter part of the nineteenth century, such deviations were
viewed as dangerous to the health of entire populations. With disability viewed as part of a
person's biological make-up and thus their genetic inheritance, scientists turned their attention
to notions of weeding such as "deviations" out of the gene pool. Various metrics for assessing
a person's genetic fitness were determined and were then used to deport, sterilize, or
institutionalize those deemed unfit. People with disabilities were one of the groups targeted
by the Nazi regime in Germany, resulting in approximately 250,000 disabled people being
killed during the Holocaust.[16] At the end of the Second World War, with the example of
Nazi eugenics, eugenics faded from public discourse, and increasingly disability cohered into
a set of attributes that medicine could attend to – whether through augmentation,
rehabilitation, or treatment. In both contemporary and modern history, disability was often
viewed as a by-product of incest between first-degree relatives or second-degree relatives.[17]
A short government advisory animation on the social model of disability
Disability scholars have also pointed to the Industrial Revolution, along with the economic
shift from feudalism to capitalism, as prominent historical moments in the understanding of
disability. Although there was a certain amount of religious superstition surrounding
disability during the Middle Ages, disabled people were still able to play significant roles in
the rural production based economy, allowing them to make genuine contributions to daily
economic life. The Industrial Revolution and the advent of capitalism made it so that people
were no longer tied to the land and were then forced to find work that would pay a wage in
order to survive. The wage system, in combination with industrialized production,
transformed the way bodies were viewed as people were increasingly valued for their ability
to produce like machines. Capitalism and the industrial revolution effectively created a new
class of "disabled" people who could not conform to the standard worker's body or level of
work power. As a result, disabled people came to be regarded as a problem, to be solved or
erased.[18]
In the early 1970s, the disability rights movement became established, when disability
activists began to challenge how society treated disabled people and the medical approach to
disability. Due to this work, physical barriers to access were identified. These conditions
functionally disabled them, and what is now known as the social model of disability emerged.
Coined by Mike Oliver in 1983, this phrase distinguishes between the medical model of
disability – under which an impairment needs to be fixed – and the social model of disability
– under which the society that limits a person needs to be fixed