DISABILITY ETHICS IN THE INDIAN SOCIO-BIOMEDICAL
SCENARIO
Rengith Chakkummoottil
The ethical dimensions of disability in the Indian socio-biomedical
context present a complex and evolving area of inquiry. As biomedical advancements
continue to transform healthcare, their implications for individuals with
disabilities raise critical ethical concerns, particularly in a country as
diverse as India. With significant disparities in access to medical resources,
varying cultural perceptions of disability, and emerging biomedical
interventions, the intersection of disability ethics and healthcare requires
careful examination. This article explores how contemporary medical and
technological practices impact the treatment and dignity of individuals with
disabilities in India. It also examines the ethical challenges posed by these
developments in light of Catholic moral principles, addressing issues such as
equitable healthcare access, informed consent, and the societal integration of
persons with disabilities.
1. Defining Disability
Disability is
understood as a physical or mental impairment that significantly limits one or
more major life activities. This definition focuses on the physiological or
psychological conditions that affect the person’s normal functioning, whether
they are congenital, acquired, or the result of disease or injury. The World
Health Organization (WHO) offers the following definition: “Disability is
defined as any restriction or lack (resulting from an impairment) of ability to
perform an activity in the manner or within the range considered normal for a
human being”.[1] People who are physically
or mentally disabled have many disadvantages as they have impairments, such as
paralysis, blindness, or a psychiatric disorder, that may reduce their ability
to do things that nondisabled people do. Also, disabled people often are
subjected to various degrees of exclusion from the social and economic life of
their communities.
People with
disabilities tend to be looked down on, ignored, discriminated against, and
otherwise badly treated. Sometimes they are denied education or medical care or
excluded from employment. Occasionally, they are subjected to violence or other
forms of abuse. In countries like India, their needs for food and shelter are
not equitably met. Disabled individuals, particularly women and children, are
more vulnerable to violence, abuse, and exploitation due to their dependence on
others and their marginalized status. Many nondisabled individuals are
uncomfortable in the presence of the disabled and therefore exclude them from
social life.[2]
2. Models of Disability Studies
The study of disability has evolved significantly over time, moving from
purely medical perspectives to more complex and multidimensional approaches.
Disability studies as an academic discipline examines the social, cultural, and
political dimensions of disability, challenging traditional views that have
often marginalized disabled individuals. Central to this field are various
models that attempt to conceptualize disability, each offering a unique lens
through which disability can be understood and addressed. These models not only
shape how society perceives and interacts with disabled individuals but also
influence policies, healthcare practices, and the development of support
systems. They reflect the evolving understanding of disability, from seeing it
solely as a medical issue to recognizing it as a social construct, a human
rights concern, and a multifaceted experience shaped by a variety of factors.[3] This
section explores relevant models, providing a comparative analysis to
understand how they contribute to the discourse on disability.
2.1 The Moral Model
The Moral
Model of Disability is one of the oldest perspectives, viewing disability as a
consequence of moral failings or sins and was often promoted by religions.
Historically, this model was prevalent in societies where disability was seen
as divine punishment or a sign of moral inferiority. This model often leads to
stigmatization and social exclusion, portraying disability as a mark of shame
or spiritual deficiency. While largely outdated, its influences can still be
seen in some cultural and social attitudes. It views disability as a result of
moral or spiritual failure and is associated with stigma and marginalization.[4] Sometimes it is not only
the individuals’ sin that is regarded as a possible cause of their disability,
but also any sin that may have been committed by their parents and/or
ancestors. This model has a negative impact on the individual with disability and
his or her family, which is the potentially destructive consequences of such a
view, in the sense that it may lead to entire families being excluded from
social participation in their local communities.[5]
There is an
additional form of the moral or religious model of disability, whereby the
challenges associated with disability are viewed as a God given opportunity for
character development. Here disability may be regarded as a ‘blessing’, as they
have the opportunity to learn some important life lessons that able-bodied
people do not necessarily have the opportunity to learn. From this perspective,
individuals are selected by God or a higher power to receive a disability not
as a curse or punishment but to demonstrate a special purpose or calling.
Although the moral model of disability is no longer as prevalent as it was in
in premodern times, the basic philosophy underlying the model is still
frequently encountered in the way people reason when confronted with illness or
disability. Moreover, there are certain cultures where this model of disability
is still the predominant view.[6]
2.2 The Cultural
Model
The Cultural
Model of Disability emphasizes the role of culture in shaping the experience
and representation of disability. This model looks at how different cultures
perceive and react to disability and how cultural narratives, symbols, and
practices influence the lives of disabled people. It also highlights the
importance of identity and the representation of disability in media, arts, and
society. It focuses on cultural interpretations and representations of
disability and highlights diversity in the experience of disability across
cultures emphasizing the role of identity and social narratives.[7] Different cultures may
have varying perspectives on disability, which can affect how individuals with
disabilities are treated, perceived, and represented.
This model
emphasizes the importance of representation, how disability is depicted in
media, literature, art, and other cultural forms. Representations of disability
can either reinforce stereotypes or challenge them, influencing public
perception and self-identity. The Cultural Model also explores how individuals
with disabilities form their identities within their cultural contexts. This
includes how they see themselves and how they are seen by others. Disability is
often embedded in cultural narratives, myths, and symbols that shape societal
attitudes. For example, in some cultures, disability may be associated with
concepts of sin, fate, or karma, while in others, it may be linked to ideas of
heroism, inspiration, or overcoming adversity. These narratives can either
empower or disempower individuals with disabilities, depending on whether they
are positive or negative. This model encourages the exploration of how factors
such as race, ethnicity, gender, religion, and socioeconomic status intersect
with disability, creating diverse experiences and challenges. The Cultural
Model has contributed to the academic field of disability studies, which
explores disability from a cultural, social, and historical perspective.
Scholars in this field analyse how disability is constructed and represented
across different cultures and time periods. It has encouraged the study of how
disabled people have been and continue to be agents of cultural change,
creators of art, literature, and social movements. By recognizing and validating
the cultural aspects of disability, this model empowers individuals with
disabilities to take pride in their identities and to challenge negative
cultural narratives. It encourages the creation and promotion of a positive
disability identity, which can be a source of strength, community, and
solidarity. Thus, the Cultural Model of Disability provides a valuable lens for
understanding how disability is shaped by and interacts with cultural factors.
It highlights the importance of representation, identity, and the diverse
experiences of disability across different cultures. By recognizing disability
as a part of cultural expression and identity, this model promotes a more
inclusive and respectful approach to disability, celebrating it as an integral
part of human diversity.[8]
2.3 The Medical
Model
According to
the medical model, a disabled person’s lack of ability to perform normal human
activities can be traced entirely to that person’s impairment. A paraplegic
cannot get from place to place because her legs are paralyzed; a blind person
cannot read because he cannot see. Disability is a result of the state of a
disabled person’s body. Consequently, the best way to remove the disadvantage
is to correct the impairment medically, by means of surgery, drugs, physical
therapy, prosthetics, and the like. Proponents of the medical model advocate
vigorous treatment to eliminate impairments, extensive research to find cures
for impairments for which no treatment is available, and prevention of future
impairments. Prevention should be achieved by increasing the use of existing
safety devices (e.g., in automobiles), developing new ways to avoid disabling
accidents and illnesses, and identifying and encouraging healthful behaviour in
pregnant women (such as good nutrition and not smoking) to prevent the birth of
children with disabilities. Some people even support preventing the birth of
affected infants by using prenatal screening and abortion of abnormal fetuses
or using genetic engineering when possible.
Many
corrective medical interventions are performed successfully to prevent or
eliminate disability, but many impairments cannot be corrected. When medicine
cannot restore normal structure or function, the extent of the incapacity may
be reduced. However, in many cases this cannot be done, and the person remains
impaired and disabled. The disadvantages that person experiences may be
substantial. At this point the medical model has little to offer to enable a
disabled person to overcome her or his disadvantage. Because the disadvantage
is understood to arise from the impairment, if nothing can be done to remove
the impairment, it follows that nothing can be done to overcome the
disadvantage.
2.4 The Charity
Model
The Charity
Model of disability views disabled individuals as objects of pity who are in
need of care and support from others. This model tends to portray disabled
people as passive recipients of charity, which can reinforce dependency and
disempowerment. While charitable actions have often provided essential support,
this model is criticized for perpetuating a disempowering view of disability
and for ignoring the rights and agency of disabled individuals. It views
disabled people as objects of pity or charity and emphasizes dependency and
passivity.
The Charity
Model tends to reinforce negative stereotypes, such as viewing disability as a
personal tragedy or burden. It can contribute to social stigma by portraying
disability as something that makes people inferior or less capable. By focusing
on the need for charity, this model can disempower disabled individuals,
ignoring their rights, autonomy, and potential. It often fails to address the
systemic barriers that prevent disabled people from fully participating in
society. The Charity Model is criticized for perpetuating a patronizing
attitude towards disabled people, where they are seen as objects of pity rather
than individuals with rights and capabilities. While charitable actions can
provide necessary support, the Charity Model is viewed as outdated and limited.
Modern approaches advocate for seeing disabled individuals as active, empowered
members of society who deserve equal rights and opportunities, rather than
merely as recipients of charity.[9]
In concluding
the exploration of various models of disability, it is momentous to compare
them to understand their strengths, limitations, and relevance in contemporary
discourse, particularly in relation to Catholic teachings. Social, Minority,
Human Rights, and Cultural Models are empowering, advocating for the rights,
identity, and inclusion of disabled people, challenging societal norms and
structures. Biopsychosocial Model also supports empowerment by addressing all
facets of the disability experience but can sometimes be seen as too focused on
individual factors. Medical, Moral, and Charity Models are often disempowering,
portraying disabled individuals as dependent, passive, or morally inferior, and
focusing on curing or managing rather than integrating. Among the various
models, the Social, Human Rights, and Minority Models are most relevant
according to modern views and are highly compatible with the teachings of the
Catholic Church.
These models
emphasize the dignity, rights, and empowerment of disabled individuals,
aligning with the Church’s mission to uphold justice, promote inclusion, and
recognize the inherent worth of every person. The Biopsychosocial and Cultural
Models also offer valuable perspectives, particularly in their holistic and
identity-focused approaches. Meanwhile, the Medical, Charity, and Moral Models
are increasingly viewed as outdated, as they do not fully respect the autonomy,
potential, and equal status of disabled individuals in society. The Church’s
evolving understanding of disability supports models that advocate for systemic
change, justice, and the full participation of all people in the community of
faith and society at large.
2.5 The Minority Model
According to
the minority model, although disabled people have physical, sensory, or
psychological impairments, the principal source of their disadvantage is not
the impairments but the impact on those people of the socially created
environment. Because people with impairments are few in number and lack power
and influence, they make up a minority group that is not ‘considered’ in the
physical and organizational design of facilities and institutions.
Consequently, they are excluded from many mainstream activities. Thus,
disability and handicap are only to a small degree the result of impairments;
the disadvantages they involve are largely the result of a lack of social inclusion.
Whereas the
medical model explains a paraplegic’s disadvantage solely in terms of the fact
that that person cannot walk, the minority group model explains it by reference
to the fact that buildings and streets are built in such a way that a
paraplegic cannot manoeuvre a wheelchair into them or through them and
therefore cannot go where he or she needs to go to conduct business, acquire an
education, perform a job, or engage in recreation. A paraplegic is
disadvantaged because she or he cannot do those things.
In contrast
to the medical model, the minority group model claims that a great deal can be
done to overcome the disadvantage component of disability for those whose
impairments are not medically correctable. Society should be altered to make it
much more inclusive. To continue with the example of a person who cannot walk,
buildings can be fitted with ramps and elevators, cities can provide buses and
taxis with wheelchair lifts, and doorways can be widened, enabling a wheelchair
user to lead an independent life that is fully integrated into the community.
Thus, a wheelchair user would experience vastly less disadvantage as a result
of changes in society rather than by means of medical intervention.
The debate
between the more widely held medical model of disability and the minority group
model helps shape some of the crucial ethical debates over the moral treatment
of the disabled. Other relevant models of disability studies are: the Social
Model, Biopsychosocial Model, Human Rights Model, Moral Model, Cultural Model
and Charity Model.
2.6 The Biopsychosocial
Model
The
Biopsychosocial Model integrates biological, psychological, and social factors
in understanding disability. While acknowledging that impairments can have a
biological basis, this model emphasizes that the experience of disability is
shaped by a combination of psychological factors, such as mental health, and
social factors, such as relationships, societal support, and attitudes. The
model is comprehensive, stressing the interaction of these different factors in
shaping the experience of disability. This is considered to be a more holistic
approach combining biological, psychological, and social aspects recognizing
the multi-dimensional nature of disability. It is widely used in healthcare and
rehabilitation settings.[10] The Biopsychosocial Model
was first proposed by George L. Engel in 1977 as a response to the limitations
of the Medical Model, which tended to view health and illness strictly through
a biological lens. Engel argued that health and disability are influenced not
only by biological factors but also by psychological and social dimensions.
This broader perspective allows for a more holistic understanding of
disability, recognizing that an individual's experience is shaped by a variety
of interrelated factors.[11]
The
Biopsychosocial Model is built on three primary components: biological,
psychological, and social factors. Biological factors include genetic,
neurological, and physiological aspects that influence an individual's health
and functioning. In the context of disability, biological factors might involve
the presence of an impairment, chronic illness, or injury that affects a
person’s physical or cognitive abilities. Psychological factors encompass the
mental and emotional aspects that influence how individuals perceive and cope
with their disabilities. This includes cognitive functions, emotions, behaviour
patterns, and mental health conditions. Social factors involve the
environmental and societal context in which an individual lives. This includes
relationships with family and friends, access to healthcare and education,
economic status, cultural attitudes toward disability, and societal structures
that either facilitate or hinder participation. The social component of the
model highlights the importance of considering how external factors, such as
accessibility, social support, and public policies, contribute to the
experience of disability.[12]
The
Biopsychosocial Model has important implications for both the understanding and
treatment of disability. In healthcare, this model encourages a more
patient-centred approach, where the focus is not just on treating the
impairment but also on addressing the psychological and social needs of the
individual. For example, in the rehabilitation of someone with a spinal cord
injury, the Biopsychosocial Model would advocate for a multidisciplinary
approach that includes physical therapy, psychological counselling, and social
support services.
The
Biopsychosocial Model aligns well with the Catholic Church’s emphasis on the
dignity of the human person and the holistic care of individuals. Catholic
teaching advocates for the care of the whole person, recognizing that physical,
mental, and social well-being are interconnected and that addressing one aspect
in isolation is insufficient. The Church’s social doctrine, particularly the
principle of solidarity, resonates with the Biopsychosocial Model’s emphasis on
the importance of social support and inclusion for disabled individuals.
Furthermore, the Catholic Church’s commitment to the common good supports the
model’s call for societal structures that facilitate the full participation of
all individuals, including those with disabilities. The Church’s advocacy for
accessible healthcare, education, and social services aligns with the model’s
holistic approach to addressing disability.
2.7 The Human
Rights Model
The Human
Rights Model of Disability frames disability as a matter of human rights,
asserting that people with disabilities are entitled to the same rights and
dignity as others. This model advocates for the elimination of discrimination,
the promotion of equal opportunities, and the legal and social recognition of
the rights of disabled individuals.[13] This model emerged as part
of a broader global movement towards recognizing the inherent dignity and
rights of all individuals, regardless of their physical or mental abilities. It
has been heavily influenced by international human rights instruments, particularly
the United Nations Convention on the Rights of Persons with Disabilities
(CRPD), adopted in 2006.[14] The development of the
Human Rights Model can also be traced to the growing awareness of the
limitations of other models, such as the Medical and Charity models. These
traditional approaches often viewed disabled individuals as objects of pity or
medical intervention, rather than as rights-bearing citizens. In contrast, the
Human Rights Model asserts that disability is not an inherent flaw or
deficiency but rather a natural part of human diversity. This perspective
shifts the focus from ‘fixing’ the individual to ensuring that society is
inclusive and accessible to all.
The Human
Rights Model emphasizes that disabled people should enjoy the same rights and
opportunities as everyone else. Discrimination based on disability is a
violation of fundamental human rights, and efforts must be made to eliminate it
in all forms, including in employment, education, healthcare, and public life.
It advocates for the right of disabled individuals to make decisions about
their own lives. This includes the right to participate in decision-making
processes that affect them, access to the necessary support to exercise their
autonomy, and the ability to live independently within the community.[15]
The Human
Rights Model calls for the full inclusion of disabled people in all areas of
society. This principle is rooted in the belief that societal structures and
institutions should be designed to accommodate the diverse needs of all
individuals, rather than excluding those who do not fit into a narrow
definition of ‘normal’. A central tenet of this model is the obligation to make
society accessible to everyone. This includes physical accessibility, such as
ramps and elevators, as well as accessible information, communication, and
services. The model also recognizes the need for reasonable accommodation -
modifications or adjustments that enable disabled individuals to participate
fully in society. Thus, it is grounded in the recognition of the inherent dignity
of every person, regardless of their abilities. This principle demands that
disabled individuals be treated with respect and that their rights and choices
be honoured.[16]
The Human
Rights model is highly compatible with the teachings of the Catholic Church,
particularly its emphasis on the dignity and worth of every human being. The
Church’s social teaching has long advocated for the protection of human rights
and the promotion of justice, particularly for the most vulnerable members of
society. The Church’s call for a ‘preferential option for the poor’ can be seen
as aligning with the Human Rights Model’s focus on addressing the needs of
marginalized and excluded groups, including disabled individuals.
2.8 The Social
Model
The Social
Model of Disability argues that disability is not an inherent characteristic of
an individual but is instead created by societal structures and attitudes.
According to this model, disability arises when society fails to accommodate
people with impairments by creating barriers such as inaccessible environments,
discriminatory attitudes, and exclusionary practices. The model emphasizes the
need to remove these barriers to ensure full participation of disabled
individuals in society. Thus, according to the social model, disability is a
social construct and this model focuses on changing societal barriers, not the
individual. This model advocates for accessibility and inclusivity.[17]
The Social
Model of Disability fundamentally shifts the understanding of disability from
an individual, medical problem to a societal issue. Developed in response to
the limitations of the traditional medical model, which views disability
primarily as a defect or illness that needs to be cured, the Social Model
argues that it is society’s failure to accommodate people with impairments that
results in disability.
The Social
Model advocates for changing the environment and societal attitudes rather than
‘fixing’ the individual. It promotes accessibility, inclusivity, and equal
rights. This includes designing public spaces to be accessible, enforcing
anti-discrimination laws, and promoting positive representations of disability
in the media. This model has empowered disabled people to advocate for their
rights. By shifting the focus from individual limitations to societal
responsibility, it has led to significant legal and social changes. While the
Social Model has been revolutionary, it is not without its critiques. Some
argue that it downplays the real, lived experiences of impairment, including
pain and suffering, by focusing solely on social barriers. In response, some
advocates and scholars have proposed a more nuanced approach, integrating
elements of the Social Model with other models like the Biopsychosocial Model
to create a more holistic understanding of disability.[18]
The Social
Model of Disability offers a transformative perspective that empowers disabled
people and challenges society to be more inclusive. By focusing on societal
change rather than individual impairment, it opens up possibilities for full
participation and equality for all people, regardless of their abilities.
3. Disability Ethics and the
Indian Society
The main categories of social
issues pertain to disability are: issues concerning the value of the lives of
disabled people and issues that concern the rights disabled people have and the
grounds on which they claim those rights.
3.1 Dignity of
Human Life and the Lives of Disabled People
Human dignity
is an intrinsic value that applies to every individual, regardless of their
physical or mental condition. It asserts that every human being possesses an
inherent worth that demands respect and protection.[19] The concept of human dignity transcends
physical or mental abilities, asserting that all lives are valuable and
deserving of respect, care, and inclusion.[20] India, with its diverse
culture and traditions, has a complex relationship with disability.
Historically, disabilities were often viewed through a lens of karma, where
disabilities were seen as a result of past deeds, leading to social
stigmatization.
From a human
dignity perspective, disability should not be a basis for discrimination or
devaluation of a person’s worth. The Catholic tradition emphasizes the equal
dignity of all individuals and highlights that every human being, regardless of
their condition, is created in the image and likeness of God and therefore has
an inviolable dignity.[21] In the Indian context,
this principle calls for a shift in perception and treatment of disabled
individuals. It challenges the community to recognize the full humanity of
disabled people and to affirm their right to live with dignity and respect.
Despite the legal protections in place, disabled people in India face
significant challenges. These include limited access to education, employment,
healthcare, and public spaces. Discrimination and social exclusion often stem
from deep-rooted prejudices and a lack of understanding of disability as a
normal aspect of human diversity. The Indian family structure, often extended
and community-oriented, can be both a support system and a source of oppression
for disabled individuals. Families may overprotect, leading to further
isolation, or may neglect, due to the stigma attached to disability. Society,
including religious institutions like the Church, plays a crucial role in
upholding the dignity of disabled individuals. The Church’s teaching emphasizes
the preferential option for the poor and marginalized, which includes people
with disabilities. By promoting inclusion, accessibility, and respect for the
inherent dignity of all individuals, the Church can lead by example in changing
societal attitudes towards disability. In India, where religion and tradition
hold significant influence, the Church and other religious institutions can be
powerful advocates for the rights and dignity of disabled people. Through
catechesis, pastoral care, and social outreach, they can foster a culture of
inclusion and respect.
An inclusive
society values the contributions of all its members, including those with
disabilities. This requires a shift from viewing disability as a deficiency to
recognizing it as a natural part of human diversity. Education and awareness
are key to changing societal attitudes and promoting the dignity of disabled
people. Inclusive education, accessible infrastructure, and equal employment
opportunities are essential for integrating disabled individuals into
mainstream society. Moreover, social, and religious institutions must play a
proactive role in advocating for the rights and dignity of disabled people.[22]
3.2 Human Rights
and the Disabled
Disabled
people, like all others, have the right to live with dignity, access
opportunities, and participate fully in society.[23] However, the realization
of these rights often faces significant barriers due to societal attitudes,
lack of accessibility, and inadequate legal protections. The Universal
Declaration of Human Rights (UDHR), adopted by the United Nations in 1948,
proclaims that “all human beings are born free and equal in dignity and
rights”.[24] This principle applies to
every individual, including those with disabilities. The rights enshrined in
the UDHR, such as the right to education, work, health, and participation in
cultural life, are meant to be enjoyed by all people without discrimination. In
2006, the United Nations adopted the Convention on the Rights of Persons with
Disabilities (CRPD), which specifically addresses the rights of disabled
people. The CRPD is a landmark treaty that shifts the perception of disability
from a medical model, where disability is seen as a problem to be fixed, to a
social model, which emphasizes the removal of societal barriers and the
promotion of accessibility and inclusion.
Key Human Rights of Disabled People
·
Right to Equality and
Non-Discrimination: Disabled people have the right to be treated equally and
without discrimination in all areas of life.
·
Right to Accessibility:
Accessibility is a fundamental aspect of ensuring the human rights of disabled
people.
·
Right to Education: Disabled
individuals have the right to inclusive and quality education.
·
Right to Employment: Disabled
people have the right to work and earn a living.
·
Right to Health: Disabled
people have the right to the highest attainable standard of health.
·
Right to Independent Living:
Disabled people have the right to live independently and make decisions about
their own lives.
·
Right to Participation in
Cultural Life, Recreation, and Sport: Disabled individuals have the right to
participate in cultural, recreational, and sporting activities.
According to
the 2021 Census, India has over 26.8 million people with disabilities,
constituting about 2.21% of the population.[25] These individuals face
significant barriers in accessing education, employment, healthcare, and public
spaces, which impedes their ability to exercise their human rights fully. India
has made considerable strides in establishing a legal framework to protect the
rights of disabled people. The most significant legislative measure is the
Rights of Persons with Disabilities Act (RPwD), 2016,[26] which replaced the earlier
Persons with Disabilities (Equal Opportunities, Protection of Rights and Full
Participation) Act, 1995. The RPwD Act is aligned with the United Nations
Convention on the Rights of Persons with Disabilities (UNCRPD), which India
ratified in 2007. The RPwD Act, 2016, recognizes 21 categories of disabilities
and mandates the government to ensure that disabled individuals enjoy the same
rights as others. It includes provisions for education, employment, healthcare,
accessibility, and social security. The Act also establishes the right to live
with dignity, free from exploitation, abuse, and discrimination.
Despite the
robust legal framework, the realization of human rights for disabled people in
India faces significant challenges. These include:
·
Social Stigma and
Discrimination: Deep-rooted prejudices and
misconceptions about disability often lead to social exclusion. Disabled
individuals may be marginalized within their families, communities, and
workplaces, limiting their opportunities for education, employment, and social
participation.
·
Accessibility Barriers: Lack of accessible infrastructure, including public transportation,
buildings, and information systems, hinders the ability of disabled individuals
to move freely and participate in society. Despite legal mandates for
accessibility, many public spaces remain inaccessible to people with
disabilities.
·
Limited Access to Education
and Employment: Disabled people in India often face
barriers to quality education and employment opportunities. Schools may lack
the necessary facilities, trained staff, and inclusive curricula, while
employers may be reluctant to hire disabled individuals due to biases and
misconceptions.
·
Healthcare Access: Disabled individuals often encounter difficulties in accessing
healthcare services. Medical facilities may not be equipped to accommodate
their needs, and healthcare professionals may lack training in dealing with
disabilities. This can result in inadequate or inappropriate care.
·
Lack of Awareness and
Enforcement: Many disabled individuals and their
families are unaware of their rights under the law. Additionally, the
enforcement of legal protections is often weak, with gaps in monitoring,
implementation, and accountability.
4. Ethical Issues in the Socio-Biomedical
Scenario
The bioethical issues in this category are those related to the
withholding of life-prolonging medical treatment, euthanasia,
physician-assisted suicide, prenatal screening, and abortion of fetuses with
likely birth defects, and genetic engineering to prevent impairments in future
offspring.
4.1 Life-Prolonging Treatment, Euthanasia, and Physician-Assisted Suicide
In dealing with the Life-prolonging treatments, Catholic morality
distinguishes between proportionate and disproportionate means of treatment. It
obliges individuals to use proportionate (ordinary) means to preserve life and
allows patients to forgo disproportionate (extraordinary) means without this
being considered as an act of suicide or euthanasia. In the context of
disability, this distinction is critical. The Church teaches that even when a
person is severely disabled, their life has intrinsic value and should be
respected. Life-prolonging treatments should be evaluated considering the
overall well-being of the person, the potential benefits and burdens of the
treatment, and the moral obligation to preserve life.[27]
Euthanasia too presents a profound moral challenge in
this context. Disability often involves significant suffering, both physical
and emotional. However, the Church teaches that suffering, while difficult, has
redemptive value[28] and
that we are called to accompany those who suffer, not to end their lives. The
focus should be on providing compassionate care, including effective pain
management, psychological support, and spiritual care, rather than ending the
person’s life.
Physician-assisted suicide is seen as a form of
euthanasia and is considered morally unacceptable because it involves the
intentional taking of a human life. For disabled individuals, the Church
emphasizes that their lives are no less valuable than those of able-bodied
individuals. The temptation to view PAS as a means of alleviating suffering in
cases of severe disability must be resisted, as it undermines the inherent
dignity of the person and the sanctity of life. Instead, the Church calls for a
commitment to palliative care and the alleviation of suffering through morally
acceptable means.[29]
The economic realities in India, including poverty and limited access to
healthcare, can influence decisions regarding life-prolonging treatments. For
many families, the cost of prolonged medical care can be overwhelming, leading
to difficult decisions that might not align with Catholic moral teachings. The
social stigma associated with disability in India can add an additional layer
of complexity. Disabled individuals may face discrimination, neglect, or
pressure from society or even family members to consider euthanasia or PAS,
particularly in cases of severe disability.[30]
Catholic morality, however, strongly advocates for the protection and dignity
of disabled individuals, calling on society to provide care, inclusion, and
support rather than seeking to end their lives.
Euthanasia for newborns with impairments presents one of the most
ethically challenging scenarios. In many parts of India, there is a cultural
stigma attached to disabilities. This stigma can lead to neglect, abandonment,
or even pressure to consider euthanasia as a way to avoid the perceived burden
of raising a disabled child. We, however, calls for a cultural shift that
embraces the inherent dignity of all persons, including those with
disabilities. The financial burden of caring for a child with severe impairments
can be overwhelming for many families in India, especially those in poverty.
This economic strain can sometimes lead to the consideration of euthanasia as a
solution. The Church’s response emphasizes the importance of social support
systems, both from the community and the government, to assist families in
providing the necessary care without resorting to morally unacceptable
solutions. The Catholic Church’s response to these issues involves a
combination of ethical guidance and pastoral care; namely: advocacy for life, support
for families, education, and awareness, etc.[31]
4.2 Abnormal Fetuses, Prenatal Screening, and Abortion
The issues of prenatal screening, the detection of abnormalities in
fetuses, and abortion are highly contentious and ethically complex,
particularly within the framework of Catholic morality. Prenatal screening can
be morally permissible when it is used to prepare for the birth of a child with
special needs, allowing parents and healthcare providers to plan for
appropriate medical care or to address any issues that can be treated in utero.
The Church raises concerns when prenatal screening is used with the intention
of identifying and aborting fetuses with abnormalities. The screening itself is
not morally wrong, but its use as a step towards abortion is considered gravely
sinful.[32] The
Church asserts that every human being, including those with disabilities or
abnormalities detected in utero, has an inherent right to life. Aborting a
fetus due to abnormalities is seen as a direct violation of this right and is
morally impermissible. The Church calls for compassionate care for parents
facing the news of a prenatal diagnosis of foetal abnormalities. Rather than
opting for abortion, the Church encourages support for the parents to carry the
pregnancy to term, providing them with the necessary resources and care. In
India, the stigma associated with disabilities can lead to pressure on parents
to abort fetuses diagnosed with abnormalities, often driven by societal
attitudes that devalue the lives of individuals with disabilities.
The Catholic Church’s teachings on abnormal fetuses, prenatal screening,
and abortion emphasize the sanctity and dignity of every human life, including
those detected with abnormalities before birth. In the Indian context, where
cultural, economic, and social factors can influence decisions, the Church’s
role is to advocate for life, provide pastoral care, and educate the community
on the value of every person. Through these efforts, the Church seeks to uphold
the moral principle that all life, regardless of condition, is sacred and
worthy of protection.[33]
4.3 Disability and Genetic Intervention
Developments in human genetics offer the prospect of correcting or
preventing impairments by means of genetic intervention. In the future one may
be able to modify the somatic genome of an existing person to eliminate
impairment or modify a person’s germ-cell DNA (the genome of a person’s eggs or
sperm) to prevent disabling impairments in future generations. Catholic
teaching recognizes the potential benefits of genetic intervention,
particularly when it aims to prevent or treat diseases without undermining the
dignity of the human person. Interventions that seek to correct genetic
disorders or prevent diseases are generally considered morally acceptable,
provided they respect the integrity of the person. However, the Church
emphasizes that such interventions must adhere to strict ethical guidelines,
ensuring that they do not involve the destruction of embryos or other morally
problematic practices. The dignity of the human person must be the guiding
principle in all genetic interventions. While therapeutic interventions are
generally accepted, the Church has significant reservations about genetic
interventions aimed at enhancing human abilities beyond what is considered
normal. The Church opposes genetic interventions that seek to enhance physical,
cognitive, or aesthetic traits, as these interventions can lead to ethical
issues such as eugenics, discrimination, and the commodification of human life.
Catholic teaching on disability and genetic intervention emphasizes the
importance of respecting the dignity of every human life. While therapeutic
genetic interventions can be morally acceptable when used to treat or prevent
disease, the Church strongly opposes genetic enhancements that undermine the
inherent value of individuals with disabilities. In the Indian context, where
cultural, social, and economic factors can complicate these issues, the
Church’s role is to provide ethical guidance, pastoral care, and advocacy for
the dignity and sanctity of all human life.
4.4 Rights of Individuals with Mental and Neurodevelopmental
Disabilities
Disability, whether mental or neurodevelopmental, does not diminish a
person’s dignity. Every individual, regardless of their cognitive or
psychological condition, has the right to be treated with respect and to have
their fundamental human rights protected. Individuals with mental disabilities,
such as intellectual disabilities, schizophrenia, or severe mood disorders, have
the right to appropriate medical care, support, and integration into society.
Similarly, individuals with neurodevelopmental disorders, such as Autism
Spectrum Disorder (ASD), also require specialized interventions and
accommodations to ensure their well-being and participation in society. Access
to healthcare should be equitable, ensuring that all individuals, including
those with mental disabilities and autism, receive the medical and therapeutic
support necessary for their overall well-being. Healthcare should be
compassionate, evidence-based, and respectful of the person’s dignity.[34] The
inclusion of disabled individuals in all aspects of community life, education,
employment, and social activities, is essential. Those with mental disabilities
may require structured support systems to navigate daily life, while
individuals with autism may need accommodations that address challenges related
to communication, sensory processing, and social interaction.
In India, access to healthcare and support services for both mentally
disabled individuals and those with autism remains a significant concern.
Mental health services are often underfunded and understaffed, leading to
inadequate care. Autism-related interventions, such as speech and behavioural
therapy, are frequently inaccessible, particularly in rural areas where trained
specialists are scarce. This disparity leaves many individuals without
necessary support, hindering their development and quality of life. A major
biomedical concern is the ability of mentally disabled individuals, as well as
those with autism, to give informed consent for medical treatments. While some
individuals with ASD are fully capable of making informed decisions, others may
require supported decision-making mechanisms.[35]
The Church teaches that autonomy
should be respected as much as possible while ensuring the individual’s best
interests are safeguarded. Both mentally disabled individuals and those with
autism are vulnerable to exploitation in medical settings and society at large.
Therefore, legal, and ethical safeguards are necessary to protect their rights
and well-being. The Church also opposes any form of exclusion
or marginalization based on disability and advocates for a society that
embraces diversity and provides equal opportunities for all.[36]
Conclusion
In concluding
this article, it is momentous to reflect upon the role of the Church in India
in this regard. The Church in India plays a crucial role in addressing the
ethical and social challenges related to disability within both societal and
biomedical contexts. Rooted in the Church’s unwavering commitment to the
dignity of every human life, the Church actively advocates for the rights and
inclusion of disabled individuals and calls for the protection and promotion of
the most vulnerable members of society. The Church has been a proponent of the
equal dignity and rights of disabled people, often challenging societal norms
and practices that marginalize or exclude them. Through its extensive network
of educational institutions, healthcare facilities, and social services, the
Church provides vital support to disabled individuals and their families,
offering not just physical care but also spiritual and emotional nourishment.
This holistic approach underscores the Church’s belief that every person,
regardless of their abilities, is made in the image and likeness of God and
deserves to live a life of dignity and respect. The Church in India also
engages in ethical discourse on complex issues such as life-prolonging
treatment, euthanasia, prenatal screening, abortion, and genetic intervention.
Guided by Catholic moral teachings, the Church consistently upholds the
sanctity of life from conception to natural death, advocating for healthcare
practices that respect the dignity of disabled individuals. The Church’s
opposition to practices that undermine the value of disabled lives, such as
selective abortion and euthanasia, reflects its broader commitment to
safeguarding life in all its forms. Moreover, the Church has been instrumental
in promoting the rights of the mentally disabled, a group often overlooked in
broader societal and medical discussions.
In conclusion, the Catholic
Church in India serves as a beacon of hope and justice for disabled
individuals, advocating for their rights and dignity in both social and
biomedical contexts. By challenging societal prejudices and offering
compassionate care, the Church contributes significantly to the creation of a
more inclusive and just society. Through its teachings, actions, and advocacy,
the Church continues to play a vital role in shaping an ethical framework that honours
the sanctity of life and the dignity of every human being, particularly those
who are most vulnerable.
[1] Cfr. WHO, International Classification of Impairments,
Disabilities, and Handicaps: A Manual of Classification Relating to the
Consequences of Disease, 1980.
[2] Shaik M. Kaish, “Beyond Welfare Reform: Rethinking Disability
Rights through the Lens of Freedom”, in Sambhāṣaṇ, Journal of the University
of Mumbai, 4/4 (2023), 66-68.
[3] Cfr. Nick Watson - Simo Vehmas, (eds), Routledge Handbook of
Disability Studies, Routledge Publishers, New York, 2020, 1969ff.
[4] Rhoda Olkin, “Could You Hold the Door for Me? Including
Disability”, in Diversity Cultural Diversity and Ethnic Minority Psychology,
8/2, (2002), 133.
[5] Retief, M. - Letšosa, R., “Models of Disability: A Brief Overview”,
in HTS Teologiese Studies, 74/1(2018), 2.
[6]
Black, Kathy, A Healing Homiletic: Preaching and Disability, Abingdon
Press, Nashville, 1996, 27.
[7] Rosemarie Garland-Thomson, “Disability and Representation”, in Publications
of the Modern Language Association of America (PMLA), 120/2 (2005),
522-527.
[8] Lennard J. Davis, The Disability Studies Reader, Routledge,
New York 2013, 65.
[9] Jenny Morris, “Impairment and Disability: Constructing an Ethics of
Care That Promotes Human Rights”, in Hypatia, 16/4 (2001), 1-16.
[10] World Health Organization, International Classification of
Functioning, Disability, and Health, WHO, Geneva, 2001, 18-21.
[11] George L. Engel, “The Need for a New Medical Model: a Challenge for
Biomedicine”, in Science, 196/4286 (1977), 132-136.
[12] Derick T Wade - Peter W. Halligan, “Do Biomedical Models of Illness
Make for Good Healthcare Systems?”, British Medical Journal, 329/7479 (2004), 1398-1401.
[13]
Theresia Degener, “Disability in a Human Rights Context”, in Laws, 5/3(2016),
3-5; Cfr. United Nations Organization, Convention on the Rights of Persons
with Disabilities (CRPD), New York, 2006.
[14] Gerard Quinn - Theresia Degener, Human Rights and Disability:
The Current Use and Future Potential of United Nations Human Rights Instruments
in the Context of Disability, United Nations, Geneva, 2002, 26-29.
[15] Gerard Quinn - Theresia Degener, Human Rights and Disability:
The Current Use and Future Potential of United Nations Human Rights Instruments
in the Context of Disability, United Nations, Geneva, 2002, 296.
[16] Theresia
Degener, “Disability in a Human Rights Context”, in Laws, 5/3 (2016),
35.
[17] M. Oliver, Understanding Disability: From Theory to Practice,
Macmillan Education, London, 1996, 30-37.
[18]
Tom Shakespeare, Disability Rights and Wrongs Revisited, Routledge, London,
2013, 29 ff.
[19] Catechism
of the Catholic Church, 2270; Evangelium Vitae, 2; 53.
[20]
John Paul II, Christifideles Laici, 37, 53.
[21]
Vatican Council II, Gaudium et Spes, 51; Compendium of the Social
Doctrine of the Church, 144.
[22] Dicastery
for the Doctrine of the Faith, Dignitas Infinita, 53.
[23] Dicastery
for the Doctrine of the Faith, Dignitas
Infinita, 1.
[24] United
Nations, Universal Declaration of Human Rights (UDHR), 1948, art. 1.
[25]
Government of India, Department of Empowerment of Persons with Disabilities
(Divyangjan), Disability in India, accessed from http://www.ccdisabilities.nic.in/resources/disability-india,
accessed on 27/08/2024.
[26] Department of Empowerment of Persons with Disabilities, The
Rights of Persons with Disabilities Act, 2016, https://cdnbbsr.s3waas.gov.in/s3e58aea67b01fa747687f038dfde066f6/uploads/2023/10/202310161053958942.pdf,
accessed on 28-08-2024.
[27] Dicastery
for the Doctrine of the Faith, Dignitas
Infinita, 52.
[28] John Paul II, Salvifici Doloris, Apostolic Letter, 1984, 17.
[29]
Congregation for the Doctrine of the Faith, Samaritanus Bonus, V-1.
[30] Sanjay Jain - Malika Jain, “Enabling Legal Order: Exploring Recent
Trends in Disability Rights Adjudication in India”, in Sambhāṣaṇ, Journal of
the University of Mumbai, 4/4 (2023), 24-28.
[31] Dicastery
for the Doctrine of the Faith, Dignitas Infinita, 52.
[33] Congregation
for the Doctrine of the Faith, Samaritanus Bonus, V-6.
[34] Cfr. National Institute for Health and Care Excellence (NICE), Autism
Spectrum Disorder in Adults: Diagnosis and Management (Clinical Guideline - 142),
NICE, London, 2021.
[35] Cfr. Alka A Subramanyam - Abir Mukherjee et. al, “Clinical Practice
Guidelines for Autism Spectrum Disorders”, in Indian Journal of Psychiatry,
61 (Suppl 2) (2019), 254-269.
[36] John Paul II, Document of the Holy See for the International
Year of Disabled Persons, on 4 March 1981, I.1 and II. 1, in Origins,
10 (1981), 747-748; See also: Francis, Final Document - XVI Ordinary General
Assembly of the Synod Of Bishops for a Synodal Church: Communion,
Participation, Mission, 26 October 2024, 64.
