A LITTLE INCLUSION IS A
DANGEROUS THING
Design, Disability and
Everything in Between
SHILPA DAS
NATIONAL INSTITUTE OF DESIGN
Useful starting points
Infirmity; Affliction; Invalid; Cripple Disability: Has been:
19th C statistics, medicine and law: “a spectral presence in history”
Deviance; Abnormality; Disorder
“a space of unwanted calamity” (Titchkosky, 2011)
Classifications of degrees of intellectual capacity
Idiot; Moron; Feeble-minded; Imbecile “a dustbin of disavowal”
(Shakespeare, 1994)
Legitimate medical descriptions: “associated with the semiotic stickiness of
Mentally retarded; Spastic abominations”
(Das, 2024)
Handicapped; Differently abled; specially abled;
challenged; “excluded from the making of the cultural, political,
and intellectual world’ (Abberley 1998).
Divyang (GOI): The term can make oppressive values and
systems acceptable taking the focus away from the
rights-based approach to disability.
“Euphemism treadmill” (Harvard linguist Steven Pinker
in The New York Times):
When a word becomes derogatory, a polite word is used
to replace it. But when this polite word (euphemism)
becomes tainted by association, a new word has to be
found. And, this too acquires its own negative
connotations. 2
3 Two main ways to refer to disability
Person first language: puts the word ‘person’ first, before any
reference to disability is made. This type of language is all about
acknowledging that human beings who have disabilities are in
fact, people first, and they are seen not just for their disability.
It asserts the value of the person first and the disability becomes
secondary Eg. ‘person with a disability’, ‘a person who has Down
syndrome’ or ‘a person who uses a wheelchair’.
Identity first language: This is all about acknowledging disability
as part of what makes a person who they are. So when using
IFL, you might say, ‘disabled person’, or ‘blind person’.
In this case, disability isn’t just a description or diagnosis; its an
identity that connects people to a community, a culture and a
history.
There is one form of address that is
off limits always: please do not ever
refer to someone by their mobility
equipment. Not only is this rude but to
equate a person to an object
completely undermines one’s
humanity. Eg. ‘the cane guy’ ‘ the
hearing -aid lady.’ ‘watch out for the
wheelchair’ ‘wheelchair person’ (say
wheelchair user). A person is a person,
not a piece of equipment.
No need to sugarcoat it.
Special needs
https://www.youtube.com/watch?v=kNMJaXuFuWQ 4
Crip : Some of us often use the term “crip” as well as “disabled”. That term derives from
the pejorative term “cripple”, but has been re-appropriated and revitalized, as has been
the term “queer”, removing it from the mouths of those who would humiliate people and
place it squarely in the camp of liberation and freedom. Just as queer upsets the traditional
ways of thinking about gender and sexuality, so crip gets us to rethink disability, normality,
and the evolving accepted methods of studying disability.” (Davis, 2018).
Disability Studies is an evolving and strategic interdisciplinary and transdisciplinary
endeavor spanning the humanities, social sciences and cultural studies—“a matrix of
theories, pedagogies and practices”.
It examines the concepts, categories, and the social, cultural, philosophical, historical,
political and social policy related dimensions of disability and the experiences of disabled
people more broadly.
It also questions so called easy explanations of disability, in order to understand how and
why they were used in the first place and how they might evolve in the future.
5
Factsheet
•WHO: 1 billion people globally
suffer disabilities.
Disabled people themselves argue that far
•Census 2011: There are approx. from being an appendage, disability is an
2.68 crore disabled people in India
(2.21 % of population) and it directly essential part of the self.
impacts the lives of 600m Indians --Mike Oliver
• India has more disabled people
than the total population of UK,
Canada or Australia.
•45% of disabled people in India
(1.46 cr) are illiterate (about 20%
more than the national average),
and only 9% of them go on to
complete a secondary education or
higher.
• Only 1/3rd of all disabled persons
find employment.
•UN: There are 300 m women and
girls worldwide with disabilities,
most of whom live in developing or
resource-poor countries.
WHO 2011. World Report on Disability.
GoI. Census 2011.
GoI. Disabled Persons in India: A Statistical Profile 2016. Ministry of Statistics & Programme Implementation.
7 People with Disabilities. UN definition
Just a note on the picture
People with physical, mental, hearing and visual impairments,
visible or otherwise, including people with mental illness and
mental health problems, learning disabilities, and various
chronic conditions such as diabetes, heart or kidney disorders,
epilepsy, HIV/AIDS, diseases predominantly including women
such as breast cancer, arthritis, lupus, fibromyalgia and
osteoporosis.
It includes people with disabilities of all ages, in rural and urban
areas, regardless of the severity of the disability, regardless of sexual
preference and regardless of cultural background, or whether they
live in the community or in an institution.
Source: A Manifestation of the UN Standard Rules on the Equalisation of Opportunities for
Persons with Disabilities”
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The Rights of Persons with Disability Act (RPWD)
2016
Blindness Within the Indian legislative
Low-vision
framework, disability is determined by
Leprosy Cured persons
a process of certification carried out by
Hearing Impairment (deaf;hard of hearing)
Locomotor Disability
state constituted boards. These work
Dwarfism on the basis of degree of impairment
Intellectual Disability and a minimum of 40% disability
Mental Illness should be there to be defined as
Autism Spectrum Disorder disabled.
Cerebral Palsy
Muscular Dystrophy
Chronic Neurological conditions
Specific Learning Disabilities
Multiple Sclerosis
Speech and Language disability
Thalassemia
Hemophilia
Sickle Cell disease
Multiple Disabilities (deaf-blindnes)
Acid Attack victim
Parkinson's disease
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GoI. 2016. The Rights of Persons with Disabilities Act 2016.
Understanding Disability
Disability is broadly understood in a continuum as:
Disease/Accident → Impairment → Disability → Handicap
Impairment: A permanent or transitory psychological, physiological
or anatomical limitation in the structure and function of an organ
Disability: Restrictions on or prevention of carrying out an activity
because of an impairment in the manner or within the range
considered normal for a human being e.g., difficulty in walking,
seeing, speaking, hearing, counting, lifting, reading, writing, etc.
Handicap: Disability + restricting factors in the environment. Usually
a product of external factors such as social attitudes, extreme
poverty, a lack of information and access to quality services.
As per WHO-ICIDH, Geneva, 1980
9
For centuries, people with disabilities have been
an oppressed and repressed group. They have
been isolated, incarcerated, observed, written
about, operated on, instructed, implanted,
regulated, treated, institutionalized, and
controlled to a degree probably unequal to that
experienced by any other minority group.
-----Lennard J Davis; The Disability Studies Reader; 2006
11 People with Disabilities. UPIAS definition.
Just a note on the picture
Impairment : A permanent or transitory, psychological, physiological or anatomical loss or
abnormality of structure or function.
Disability: The disadvantage or restriction of activity caused by contemporary social
organization which takes little or no account of people who have physical impairments,
and thus excludes them from the mainstream of social activities.
---------------The Union of the Physically Impaired against Segregation (UPIAS) in 1976
NID campus
The WHO revised the ICIDH in 2001. This was hailed as a landmark change in terms of the
social construction of health and disability. It brought in two different types of
contextual factors influencing a person’s health: environmental factors and personal
factors. .
The earlier definitions are based upon able-bodied assumptions
of disability, and are not in accordance with the personal
realities of disabled people. This has important implications both
for the provision of services and the ability to control one’s life.
--Mike Oliver. ‘Redefining Disability: A Challenge to Research’,
2003. (Disability rights activist, academic, scholar, author)
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12 Towards a Rights-Based Perspective.
Just a note on the picture
“Disability is a social and political category because it
concerns struggles for choice, empowerment and rights”
--Len Barton Disability and Society: Emerging Issues and
Insights; (1996).
The first comprehensive human rights treaty of the 21st century,
the Convention on the Rights of Persons with Disabilities (CRPD)
and its Optional Protocol of May 2008 veered the disability
perspective towards a rights based one.
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9 Understanding of disability in India: mythology & folklore
Just a note on the picture
The moral universe of karma
In these narratives, a disability functions only as visual difference that is
imbued with certain meanings and reinforces cultural stereotypes. Indian
mythology is replete with negative stereotypes about the disabled and
equates disability with evil and as something to be feared and distrusted.
Disabled characters from the epics Mahabharata and Ramayana and from
folklore hold sway over the cultural imagination.
The Manusmriti, the basis of Hindu Law, has an exclusionary approach
towards disabled people, stipulating that the disabled should be kept away
even from holy places and auspicious events.
The Charaka Samhita of Charaka, attributes disability to misdeeds of one’s
past life.
The Morality Model Can’t walk, talk,
Charity Model see, hear
Religious Model Need help/charity
Sympathy, special
Personal Tragedy Model services, special
schools, welfare
Bitter, twisted
aggressive
schemes
Problem
=
disabled
person Sad
Need looking
tragic
after
passive
Brave
To be pitied Inspirational
Courageous
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The Medical Model Special
Institutions
Cant walk,
Sheltered
talk, see,
Employment
decide
Special Patient /
Transport Case
Problem
=
Special Disabled person
Cure
Schools
Social
Care
Workers
Therapists
Hospitals
Specialists
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The Medical Model
Constructed by the medical fraternity, biological scientists, rehabilitators, policy makers,
psychologists and sociologists and thereby becoming the ‘official’ and most authoritative
definition of disability
The focus here is still on the disability, not on the disabled
person or the experience of disability.
Disability as ‘abnormality’ or ‘pathological condition.’ A
personal tragedy.
Posits impairment as the ontological essence of disability.
Construes that the diseased or disabled body should be
cured, surgically corrected or managed according to
medical and aesthetic standards in order to become
‘whole’ again.
Conceptualises disabled people as being acted upon
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S o m at o - c e n t r i c s o c i e t i e s
the well functioning body:
--the primary locus of one's humanhood
--the epitome of health and physical vigour
--a cultural ideal
the disabled body
--'a defective departure from a valued
standard’
--considered inferior
--opposite to the norm of able-bodied
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Body Image &
Self Concept
self concept= body image
body image: the blend of an individual’s psychological experiences, feelings and
attitudes that relate to the form, function, appearance and desirability of his or
her own body, which is influenced by individual and environmental factors.
self-concept: based on accumulated perceptions throughout the lifespan; strongly
influenced by the interplay between one’s own actions, the reactions of others,
and one’s perceptions of the events and their surrounding behaviour and
outcomes 18
Stigma
Stigma: any condition of
“undesired differentness” from
what society considers normal.
A “deeply discrediting attribute”
that disqualifies the stigmatized
“from full social acceptance” and
results in other negative attributes
being heaped upon the person.
It reduces the bearer “from a
whole and usual person to a
Erving Goffman tainted and discounted one.”
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Inadequate
The Social Model
Education
Different
No jobs
Abilities
Poverty &
Passivity
economic
Dependence
dependence
Problem
=
Inadequate Disabling
services Prejudice,
(Medical,
Society Discrimination
Social)
Inaccessible
Isolation
buildings
Segregation
(schools, offices,
hospitals)
No Rights
Inaccessible
(denied
transport
rights)
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Result of dominant social, political and economic ideologies, indifferent societal barriers and
disabling environments that range from the absence of a universal design code, to an
inaccessible built environment, unusable public transport systems, segregated education,
inflexible work arrangements, communication barriers, individual prejudice, institutional
discrimination, society’s unrealistic expectations about bodily norms, culture’s false
projections of disability and lack of appropriate information on it
Collective responsibility, Social action, Rights, Choice, Social change
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Ableism
Ableism
-- refers to the systemic discrimination and social
prejudice that people with disabilities face and
stems from the assumption that there is a “correct”
or “normal” way of body and mind functioning." It
can manifest as an attitude, stereotype, or an
outright offensive comment or behaviour.
---When it comes to language, ableism often shows
up in casual statements as metaphors (“My
husband is emotionally crippled.”), jokes (“That
stand up comedian was hysterical!”), and
euphemisms (“She is differently abled” or “He is
specially abled).
---Words such as “stupid,” “insane,” “crazy,” “lame,”
“dumb,” “wierdo” “psycho”, “retard”
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Ableist Words and Better Alternatives
Stupid, Retarded, Idiot(ic), Cretin, or Moron(ic) Imbecile
Dumb
Crazy, Nuts, Mad, Psycho, or Insane
OCD or Obsessed
Lame
Blind
Deaf
Barren
Crippled
Bipolar; schizo-
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Spaz
26
Ableism
the super-crip phenomenon:
--also called “inspiration porn’
27
Ableist Words and Better Alternatives
Instead of Saying Say This
• Stupid, retarded, etc. • Ignorant, dense
• Dumb • Ignorant, dense
• Crazy, nuts, psycho, etc. • Bizarre, outrageous
• I'm so OCD. • I'm particular. fastidious
• I'm obsessed with X. • I'm enamored with X.
• Lame • Boring, unexciting
• Blind leading the blind • Unknowledgeable
• She is blind to his crush on her • She is oblivious to his crush on her
• Falling on deaf ears • You didn't hear me.
• Barren • Desolate, unfruitful
• Crippled • Disabled
• ADHD • Absentminded
• disabled parking • accessible parking
• paralyzed by fear • frozen by fear
• “don’t use that excuse as a crutch to • don’t lean on that excuse to ask her
ask her number” number 28
Find better insults. Never use the following slurs
Retard (incredibly hateful to people
with intellectual disabilities) R-word
Midget (people with dwarfism) or
short-statured M-word
Lame L-word (incredibly hateful to
people with locomotor disabilities)
Spaz, gimp, mad, crazy, psychotic,
lunatic, invalid 29
Ableism
Ableism is Ableism is
when you make when my basic rights
plans that do not include are considered
accessible venues, accessible a burden.
spaces
accessible websites Ableism is
so it becomes easier to erase nodding your head in
me understanding
from your list. instead of admitting
that you don’t have a clue
Ableism is what I said.
when you can pretend
disabled people don’t exist.
Ableism is
Ableism is the fact that I have no choice,
you feeling like but you do.
I should be grateful
for the ramps and the parking
spaces
as if access
was not a basic right.
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Allyship: The support , solidarity,
and partnership between
disabled people and/or with
individuals who are nondisabled.
The collaboration often involves
advocacy for rights, access and
inclusion.
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38 The Intellectual Terrain of Disability Studies
JustDisability
a note on the picture
discourse has moved from the disabled individual to
the existing structures in societies, collectivities and interaction
with the environment.
Studying ‘social meanings, symbols and stigmas attached to
disability identity’ and asking ‘how they relate to enforced
systems of exclusion and oppression, attacking the widespread
belief that an able body and mind determine whether one is a
quality human being.
It urges the need to look at disability as a socio-political
phenomenon’ and engaging with ‘able-bodiedness’/normalcy
itself as a cultural concept needing a critical inquiry.
Staring, pity, hostility
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40 Factsheet
•UN: There are 500 m women and •42% of disabled persons remain
girls worldwide with disabilities, unmarried in India.
most of whom live in developing or
resource-poor countries. 38% of disabled men are
unmarried.
•Only 16% of all women with 50% of disabled women are
disabilities globally are likely to unmarried.
have any college education
compared to 38% non disabled •90% of disabled women in
women and 28% disabled men. Gujarat live in rural areas, of
which only 1% go to school. As
•About 50% of disabled population
in India are women. against this, 67% disabled men
go to school.
•Only 38% of India’s women go to
school. Only 7% disabled women •NGOs exclusively working for
get college education. disabled women: NONE
•0.2% of disabled women earn
•In India, women form only more than Rs. 2000/- per month.
28.45% of the entire strength of
the decision making bodies, with
disabled women comprising a
mere 3.71%.
GoI. Census 2011.
GoI. Disabled Persons in India: A Statistical Profile 2016. Ministry of Statistics & Programme Implementation, 2016. 40
Both the categories woman and
disabled have some stereotypes
imposed upon them most commonly
Gender & Disability
under the garb of natural truths
The body becomes an important When gender enters the matrix of disability it
marker of identity for both women constitutes a deep matrix of gendered disability, and
and disabled persons. Garland- plays a significant part in influencing people’s
Thomson (1997) observes how the experience of a disabling society. However, gender is
medicalisation of women’s and the a fluid category in itself with identities being altered
disabled bodies is often employed for and reconstituted all the time.
the benefit of the politics of
appearance.
The Gaze and the Stare
On examining the ladder of hierarchy,
we find that society equates human
normality with male normality.
Female normality is defined on the
basis of this norm, and is thus a first
level of deviance, the female being
subordinate/ the “Other” to the male.
Jenny Morris 41
42 Discrediting experience of disability: Indian women
Women with disabilities are at an increased risk of being sicker,
poorer, and more socially isolated than either men with
disabilities or non-disabled women. –ILO
In India, caste, class, religion and domicile are plural identity
markers that make the daily experience of living for these
women, inchoate and tough.
For many women in India, their most punishing disability is the attitude
taken to them by society: rendered invisible by their families; often
neglected, abandoned, subjected to name-calling and stereotyped,
victims of taboos and superstitions, left out of family and community
activities (especially religious rites and rituals) and socially excluded .
Neglect, lack of medical care and less access to food or related
resources have resulted in a higher mortality rate for girls with
disabilities.
43 The discrediting experience of disability
Just a note on the picture
Our able bodied culture, looks upon women with disabilities as
imperfect, flawed, even ugly, and rejects girls with disabilities in
the marriage market; they are considered to be unfit to fulfill the
traditional roles of Indian women— of wife, homemaker, and
mother—and as not conforming to the stereotypes of beauty
and femininity in terms of appearance.
Studies reveal that women with disabilities are two to three
times more likely to be victims of physical and sexual abuse than
women without disabilities.
Concerns of Feminist Disability Studies
Feminist disability discourse
includes thick descriptions
and narratives of personal
growth, struggle, pain and
affirmation of disabled female
identities and experience.
Audre Lordre declares, ‘It is
axiomatic that if we do not
define ourselves for ourselves,
we will be defined by others—
and for their use and to our
detriment.’
44
Asha Hans Renu Addlakha Sandhya Limaye Nilika Mehrotra
45
”Performance, Community, Disability and the Medical Domain in Developmental Communication on Disability: Reflections in Hindsight.” in Alex
Mermikides and Gianna Bouchard (eds.). The Routledge Companion to Performance and Medicine. London: Routledge 2024.
“Embodiment, Identity and Design for Disability” in Sandhya Limaye and Christopher Johnstone (eds.) in Disability and Identity. New York and
Delhi: Routledge, 20234 .
“Self-concept, Embodiment, Sexuality and Disability: How Disabled Women Experience Navaratri and Gauri Vrat in Gujarat.” In Disability,
Literature and Culture: Decentring the Crip Outsider. Someshwar Sati, ed. New Delhi: Bloomsbury, 2024.
.
Reclaiming the Disabled Subject: Representing Disability in Short Fiction. Someshwar Sati et al editors. New Delhi: Bloomsbury, 2022.
“Representations of Disability in Classical Indian Art: Interrogation through Indian Aesthetic Theory” The Routledge Companion to Art and
Disability, edited by Keri Watson and Timothy Hiles. London and New York: 2022.
Disability and Public Spaces: Universal Design Approaches’ in Nilika Mehrotra (ed.) Disability Studies in India: Reflections on the Future, London
and New Delhi: Springer, 2020.
“Gendered Disability in India: A Feminist Perspective” in Rekha Pande and Sita Vanka (eds.) in Gender and Work: International Perspective. Delhi
and Jaipur: Rawat Publishers, 2019.
‘Lohi ni Sagai: Translating Literature, Disability and Culture’ in Someshwar Sati and GJV Prasad (eds.) Disability in Translation: The Indian
Experience, New Delhi: Routledge, 2019.
'Design for Disability: The Value of Universal Design.' Design for All: A Publication of Design for All Institutes of India. 12 (5), 35-45. May 2017.
‘Adrishta Streeo: Viklangtaa, Jaati ane Naarivvad’ in Ranjana Harish and V. Bharati Harishankar (eds) ‘Naarivaad: Punarvichaar’ Ahmedabad:
Gurjar Prakashan, 2015.
“Product Design for Disability: The Missing Link.” Design for All: A Publication of Design for All Institutes of India. Vol. 9. No.5. Centre for Human
Centric Research, School of Planning and Architecture, Bhopal; 2014.
‘Hope for the Invisible Women of India: Disability, Gender and the Concepts of Karma and Shakti in the Indian Weltanschaaung’ in Janet Horrigan
and Ed Wiltse (eds.), Hope Against Hope: Philosophies, Cultures and Politics of Possibility and Doubt. Amsterdam and New York: Rodopi Publishers,
2010.
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‘Invisible Women: Disability, Gender and Feminism,’ in Ranjana Harish and Bharathi Harishankar (eds.), New Delhi and Jaipur: Rawat Publications,
2008.
Thank You
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