Address for correspondence: Prof. Bevinahalli Nanjegowda Raveesh, Professor and Head, Department of Psychiatry, Mysore Medical College and Research Institute, Mysore - 570 001, Karnataka, India. E-mail: moc.oohay@6hseevar
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Human rights’ frameworks are increasingly being recognized in general, and mental health in particular. Human rights can thus act as powerful catalysts for change in areas such as mental health care that has historically suffered from stigma, discrimination, and loss of dignity of patients. Mental health law in India has evolved over the past few decades, in keeping with improved delivery of care, societal changes, and increasing awareness of a person's human rights and privileges. The new Mental Healthcare Act, 2017 has shifted the focus to a rights-based approach to provide treatment, care, and protection of a person with mental illness compared to previous Mental Health Act 1987. This dynamic shift is to align, harmonize, and fulfill the requirements of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). This article reviews the existing international human rights model of disability and recovery, and the Mysore Declaration, and does a critical review of UNCRPD.
Keywords: Human rights, India, mental health, Mental Healthcare Act 2017Involuntary detention of a Person with Mental Illness (PMI) has been common in inpatient management of mental disorders in almost all societies. As a result, various jurisdictions developed, were dedicated to mental health legislation.[1] The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was the first UN Convention of this millennium.[2] It was felt that a specific convention was needed to deal with the human rights of persons with disabilities, as the existing body of UN human rights framework was not inclusive of disability and was insufficient in challenging national laws that excluded persons with disabilities from participating in the society. The purpose of the UNCRPD was to clarify the existing human rights law as it relates to persons with disabilities, as opposed to the creation of new human rights. India was among the 80 countries that signed its acceptance on the very first day, and India ratified the UNCRPD on October 1, 2007.[3]
Mental health law in India has been evolving over the past few decades, in keeping with the improved delivery of care, societal changes, and the demand for enhanced accountability from a population that is increasingly aware of their rights and privileges.[4,5,6] The Mental Healthcare Act 2017 (MHCA 2017)[7] has emphasized on rights of PMI in keeping with the UNCRPD, compared to the previous Mental Health Act 1987.[8] MHCA 2017 fulfills an important requirement of the UNCRPD, by guaranteeing to all persons the right to access to mental healthcare, including a range of services for persons with mental illness such as shelter homes, supported accommodation, community-based rehabilitation; the right to community living; the right to live with dignity; protection against cruel, degrading, and inhuman treatment; the right to equality and nondiscrimination; the right to information, confidentiality, and access to medical records; the right to personal communication and legal aid; and the right to make complaints about deficiencies in provision of services, in addition to other similar legal remedies.[2,7]
International Human Rights Instruments which protect human rights by providing freedom, justice, and peace to all members in the world include (a) Universal Declaration of Human Rights (UDHR),[9] (b) International Covenant on Economic, Social, and Cultural Rights,[10] (c) International Covenant on Civil and Political Rights,[11] and (d) UNCRPD.[2] Box 1 lists the important articles of International Human Rights Instruments with relevance to mental healthcare. India is a signatory to these instruments and thus has an obligation to amend and “harmonize the existing laws to honor the commitment.”
Important articles of international human rights instruments
| UDHR |
| Article 22 - The right to social security |
| ICESCR |
| Article 6 - The right to work |
| Article 9 - The right of everyone to social security |
| Article 11 - The right to an adequate standard of living |
| Article 12 - The right to the enjoyment of the highest attainable standard of physical and mental health |
| United Nations CRPD |
| Article 12 - Equal recognition before the law |
| Article 14 - Liberty and security of the person |
| Article 19 - Living independently and being included in the community |
| Article 21 - Freedom of expression and opinion and access to information |
| Article 24 - Right to education |
| Article 25 - Right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability |
| Article 28 - Right to work, on an equal basis with others |
UDHR – Universal Declaration of Human Rights; ICESCR – International Covenant on Economic, Social and Cultural Rights; CRPD – Convention on the rights of persons with disabilities
A human rights-based approach incorporates concepts that support the realization of human rights, such as nondiscrimination, social justice, participation, and accountability. Generally, it refers to working to a set of principles that (implicitly or explicitly) include a blend of adherence to international treaties and conventions and participatory development models.[12]
The International Human Rights Network defines a rights-based approach as one that (a) uses international human rights standards, (b) empowers target groups, (c) encourages participation, (d) ensures nondiscrimination, and (e) holds stakeholders accountable to fundamental rights. There is no single “rights-based approach,” a meaningful approach has to be a conscious shift from a welfare-based system to a system where people are empowered to make their own choices and claims and where policy-makers and service providers are obligated to address those claims.”
A right is an entitlement, “a thing one may legally or morally claim.”[13] The term human rights refer specifically to rights which a human being possesses by virtue of the fact that he or she is a human being. Human rights do not need to be earned or granted; they are the birthright of all human beings simply because they are human beings. Edmundson distinguishes human rights from other rights by stating that “human rights recognize extraordinarily special, basic interests and this sets them apart from rights, even moral rights, generally.”[14] The term “human rights” is most commonly understood by reference to statements of human rights dating from the 20 th century, including, most notably, the UDHR adopted by the UN General Assembly in 1948.[9] Many of the values underpinning these statements of rights are re-emphasized in the UNCR, adopted by the UN General Assembly in 2006.[15]
The relationship between mental health and human rights is complex and bidirectional. The primary purpose of human rights is to protect individual dignity. Dignity may be undermined by mental illness itself or its treatment (e.g., involuntary detention). The observance of these rights requires a dynamic balance between support and autonomy, and this balance may vary over time, especially (but not exclusively) among individuals with mental disorder: “Everyone needs support at times, and everyone also cherishes personal freedom.”[16] To promote dignity in clinical practice, Gallagher points to the importance of people (e.g., clinicians), professional practice (what clinicians do), place (clinical environments), and processes (for patients, families, and staff).[17] The loss of dignity with the extent to which specific circumstances prevent exercise of capabilities can happen at various levels that include trivial loss (when dignity is easily restored), serious loss (when substantial effort is required to restore dignity), and devastating loss (when it is impossible to regain dignity without help). Creating appropriate circumstances to support dignity in clinical settings involves developing an awareness of the importance of respect, weighing the balance between independence and dependence, and promoting the individual's priorities and interests, in the context of staff practices, clinical environments, health-care resources, and various other aspects of care.[18] The biomedical practice in the twenty-first century should be driven not by the vagaries of individual choice but by a shared vision of human dignity that reaches beyond individuals.
PMI are one of the most vulnerable populations in the society. They are often isolated, stigmatized, discriminated, humiliated, and marginalized. They often end up in unhygienic and inhumane living conditions either in the community or in the mental hospitals, with an increased likelihood of human rights violation. There has long been a tendency to neglect the care of PMI in the general setting; the reason being the lack of understanding and poor management of mental illness by the health professionals and people. Hence, mental health legislations are concerned mainly with:[19]
Rights of the mentally ill (right to care and human rights) Quality of mental health care Use of administrative, and budget control, measures, andConsumer participation and involvement in the organization and management of mental health-care services.
When examining the concept of health care as a “right,” one may consider it as either a legal or a moral one. The proposition is that accessible mental healthcare for all is, in essence, a moral right. The Indian mental healthcare system that distributes healthcare unevenly, on the basis of any determining factor other than necessity, raises numerous questions about how ethical that system is. In a society where a disparity in the level of care or access to care exists, inevitably, there will be individuals who fail to receive the care they desperately need.[20]
Capacity is an important legal concept. The law in many jurisdictions has been designed to respect individual autonomy. However, persons with disabilities are at a risk of having their decisions ignored. Mental capacity is a concept used to define the line between legally effective and legally ineffective decisions. If the individual is considered to have mental capacity, then he/she has the legal capacity to act – meaning the decisions or choices will be respected.
If an individual is considered not to have mental capacity, then he/she will not be considered to have the legal capacity to act – meaning the decisions may be disregarded and others will make decisions on their behalf. This was known as substitute decision-making, but UNCRPD prescribes supported decision-making wherein the individual is supported to regain capacity and make his/her own decisions. Supported decision-making might involve enabling people with disabilities to identify people that they know and trust who can support them to make decisions, whether formal, informal, or both. Supporters may sometimes be legally recognized (for example, they may be specified as supporters in representation agreements, advance directives, etc.) or informally designated by the person (natural supports, the circle of friends, etc.). Supported decision-making may also involve enabling people to nominate a person who can communicate their wishes and preferences when they are unable to do so themselves. Supporters do not make decisions on behalf of the person or try to unduly influence them. It is important to note that support needs to be tailored to the person: because the ability to make decisions can vary at different times in life, a person may need different levels of support. At times, they may need no support at all; at other times, a small amount of support; and yet at others, more intensive support.
The declaration recognizes the potential tension between the rights of patients who refuse medication and the benefits of potential restoration to normal functioning through involuntary treatment, as well as the wishes of the family members who often play an important role in the treatment of mental illness in India.[21] The declaration asserts that:
“There is an urgent need for the recognition and implementation of the rights of PMI, following principles with regard to equality, security, liberty, health, integrity and dignity of all people, with a mental illness or not.”
It goes on: “All parties responsible for the care and treatment of mental illness should work towards the elimination of all forms of discrimination, stigmatization, and violence, cruel, inhumane or degrading treatment. We affirm that disproportionate, unsafe or prolonged coercion or violence against persons with mental illness constitutes the violation of the human rights and fundamental freedoms and impairs or nullifies their enjoyment of those rights and freedoms.”
“Many models have attempted to define disability. These models are medical, social, charitable, human right, moral, economic, professional, spectrum, empowerment and market model. The medical model identifies people with disabilities as impaired and passive recipients of care who need to be repaired in order to fit in with the rest of the society. The charitable model identifies persons with disability and emphasizes and encourages dependence on others, rather than independence. The experts feel that this model will make a disabled person more dependent and may result in loss of life skills.” The social model says that disability is caused by the way a society is organized, rather than by a person's impairment or difference. The human rights model of disability builds on the social model.[22] It agrees that the society must change in order to accommodate human diversity and enable participation. However, it extends the social model by framing people with disabilities as “rights-holders” and the state and others as “duty bearers,” i.e., the individuals and institutions responsible for protecting, respecting and fulfilling the rights. The UNCRPD strongly promotes this model of disability. Recovery and the UNCRPD model of disability have both been recognized as paradigm shifts: they are person-centered and strengths-based; recognize people with lived experience as equals in society; and are aimed at enabling their full, equal, and meaningful participation.
The Scottish Recovery Network believes CHIME offers a structure to help support recovery-oriented approaches.[23] CHIME stands for:
This means to have good relationships and to be connected to other people in positive ways through peer support and support groups and support from others and the community.
Creating hope and optimism that recovery is possible through methods that include motivating to change, creating positive thinking that value success, and encouraging dreams and aspirations.
Helping them regains a positive sense of self and identity and overcome stigma.
Living a meaningful and purposeful life as defined by the person (not others) and characterized by meaning in mental “illness experience,” spirituality, and meaningful life and social goals.
Empowering a person with disability by focusing on strengths, enabling control over life, and encouraging to take personal responsibility.
The PANEL approach offers a way to consider how one can put human rights into practice, noting their influence over the design, delivery, and assessment of care and support.[24]
How are people actively taking part in decision-making on this issue? Everyone has the right to participate in decisions which affect them. Participation must be active, free, and meaningful and give attention to issues of accessibility, including access to information in a form and language which can be understood.
How are organizations and people meaningfully accountable for realizing human rights in this context? Accountability requires effective monitoring of human rights standards. For accountability to be effective, there must be appropriate laws, policies, administrative procedures, and mechanisms of redress to secure human rights.
Does this approach recognize that everyone has the same rights (regardless of their characteristics or status)? A human rights-based approach means that all forms of discrimination must be prohibited, prevented, and eliminated. It also requires the prioritization of those in the most vulnerable situations who face the biggest barriers to realizing their rights.
How are people acquiring the power to know, understand, and claim their rights in this context? People should understand their rights and be fully supported to participate in the development of policy and practices which affect their lives. People should be able to claim their rights where necessary.
Have we made sure that the approach is embedded in law that applies human rights standards? The full range of legally protected human rights must be respected, protected, and fulfilled. A human rights-based approach requires the recognition of rights as legally enforceable entitlements and is linked to national and international human rights law.
The UNCRPD is a major milestone in safeguarding the rights of persons with disabilities. No doubt, the spirit and purpose of the CRPD are to uphold human dignity and autonomy. However, a relatively new concept, namely, vulnerability, that is central to mental health care, is not addressed.[25] Mental illness is not necessarily associated with disability. Disability is not formally defined in the UNCRPD, allowing individual State Parties considerable latitude in how they define disability in their domestic law. Whether all people with “mental” illnesses are appropriately considered as having a “disability” is a moot question. What is the nature of the “impairment” in mental illness? If a person receives any diagnosis from the classificatory manual of mental disorder, are they de facto a person with a disability under the CRPD? Can the discrimination consequent on being diagnosed with mental illness, constitute a disability? Do people with mental illness identify with the idea that they are “persons with disabilities?”
Subsequently, in 2013, the special rapporteur of the UN Human Rights Council, on torture and other cruel, inhuman, or degrading treatment or punishment; claimed to abolish all kinds of coercive treatment as well as substituted decision-making legislations such as guardianship. This has caused considerable concern among psychiatric organizations and stimulated ongoing controversies between psychiatrists and patients’ organizations. There is a need for urgent consideration of reduction of coercive practice or coercive alternative in psychiatric care; this requires the full participation of practitioners and a broad range of user and family groups.
Empirical research on aspects of the UNCRPD is scarce. This is in contrast with the huge impact it could and probably will have on the complete organization and structure of mental health care in all ratifying countries. Much more evidence is needed for answering the many questions that UNCRPD poses, such as how inclusion and equality can be realized for people disabled by mental disorders and what impact a change of policies, service provision, legislation, and attitudes would have on their mental health.
Article 12 (Legal Capacity) of UNCRPD views that all persons have the legal capacity at all times irrespective of the mental status, and hence, involuntary admission and treatment, substitute decision-making, and diversion from the criminal justice system are deemed indefensible. If this is considered, then there has to be an abolition of the insanity defense and other similar defenses. The article threatens to undermine critical rights for persons with mental disabilities, including the enjoyment of the highest attainable standard of health, access to justice, the right to liberty, and the right to life. On the contrary, stigma and discrimination might also increase.
The historical divide, both in policies and practices, between mental and physical health resulted in political, professional, and geographical isolation, marginalization, and stigmatization of mental healthcare. Human rights frameworks are increasingly being recognized as important contributors to health care in general and mental health in particular. Human rights set out universal, non-negotiable standards for all people and can thus act as powerful catalysts for change in areas such as mental healthcare that has historically suffered from stigma, discrimination, and loss of dignity of patients. Human rights-based approach ought to be in place for moral reasons since human rights are fundamental pillars of justice and civilization. Furthermore, the rights-based approach helps to address the structural inequalities in society that hinder people's recovery.
There are no conflicts of interest.