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.

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[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.

[32] Congregation for the Doctrine of the Faith, Donum Vitae, 5/I/2.

[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.