II. Survey of literature on Article 12

A survey of literature documents the knowledge generated on an issue in a field. Such documentation operates as an audit of both the writing and research done and not done in a field. The survey could be exhaustive, comprehensive or representative. An exhaustive survey would be an effort to document every kind of writing on the issue of legal capacity. A comprehensive survey would encompass every genre of writing on the subject. A representative survey would be an illustrative documentation of the various genres of research and writing on the subject. Each kind of survey serves its own pedagogic or advocacy purpose; and has its own strengths and weaknesses.

An exhaustive survey provides the most complete documentation of the writing and research on the subject. The authenticity of analysis on such data cannot be gainsaid. It is not possible to trump such analysis by referring to data not covered by the survey. The exhaustiveness of the survey would be its most significant value. Despite its evident advantages, the exhaustiveness of the exercise makes the survey resource-intensive. Plenty of resources in the form of time, money and personnel would be needed to undertake such a survey.

Thus, in a globalising world, an exhaustive survey would ideally need to cover writings in all languages. If the data analysis were by the same team, then translation services would be required, which would be both expensive and time-consuming. A pragmatic solution could be to limit the survey to the languages of the UN. Even with this pragmatic limitation, crossing the language barrier would substantially increase the literature on the subject whether in the original or as a translation.

A comprehensive survey would spawn a representative sample from each of the chosen languages in the selected genres. Thus, writing emanating from first and Third World countries and survivor writing would necessarily be included. The lack of exhaustiveness may reduce sourcing authenticity. Even so, when analysis is made in acknowledgement of the limitations of the data collection, the survey cannot make larger claims than the data.

The representative survey is at best selective in terms of the languages included, the perspective adopted and the socio-economic system covered. This survey is evidently selective, which is understandable, but the evident limitation of the selectiveness can be overcome if both the makers and the readers of the survey are constantly made conscious of the limited sourcing of materials. Such sourcing disclaimers prevent the survey from making taller claims than the literature supports.

The paper compiling an up-to-date survey of the literature on Article 12 in this Journal (de Bhailís and Flynn, Reference de Bhailís and Flynn2017) can be categorised as making a representative survey of writings in English on Article 12. The writings have been primarily sourced from First World countries. Therefore, even countries that use English as a first language were excluded. This happens to be the case even when a number of these countries have literature available on their law-reform efforts in English. India and Israel are cases in point. There are political consequences of such an omission. When advocates in Third World countries (e.g. India) refer to First World examples of reform, they are often told that the resources available in First World countries are not available to them. Similarly, a number of advocates find greater cultural affinity with countries in geographical contiguity (Israel and India) than with distant First World countries.

It is a basic tenet of research methodology that, when recent events are being documented, in order to avoid reporting bias, it is wise to access information from several sources and not be restricted to any one source alone. The authors have been alert to avoiding ideological bias insofar as they have consciously reported views that are in opposition to their political position. However, similar precautions have not been taken whilst reporting on the history of the Convention.

The CRPD has privileged the voice of persons with disabilities. In the context of literature surveys, the survivor literature needed to be specifically targeted. Thus, first-person narratives on the personal consequences of denial of legal capacity may have significantly helped the cause of the new paradigm. Article 12(2) of the CRPD recognises the right to legal capacity on an equal basis with others. Would this equal basis be the same in democratic and hierarchic polities? International human rights are meant to function on the basis of universality. It was on the strength of this argument that the infamous footnote was dropped from Article 12. Significantly, the footnote was dropped only after legal capacity had been translated in several languages as the right to hold rights and not the capacity to act. Literature surveys need to expand their materials to search across languages and economic status, along with privileging survivor narratives. These kinds of literature surveys could greatly contribute to developing a global discourse on Article 12.

III. State intervention permitted by Article 12

Restricting the power of the state and maximising the freedom of the individual are among the basic tenets of liberalism. This political philosophy allows state intervention when individuals abuse their freedom to cause harm to others. However, intervention is impermissible when the freedom is used to cause harm to one's self. Therefore, liberal theory admits to the policing powers of the state but does not endorse it operating as parens patriae. Flynn and Arstein-Kerslake (Reference Flynn and Arstein-Kerslake2017) rely upon liberal theory in settling the permissible limits of state intervention in the lives of persons with disabilities.

In working out the boundaries of permissible state interventions, the authors are attempting to avoid a range of consequences. Firstly, they want that the protection accorded to other vulnerable adults is also extended to persons with disabilities. Whilst making this equality claim, they seek to guard against colourable protection whereby, under the ostensible label of vulnerability, protection is in fact being offered by reason of disability. To avoid this consequence, the authors contend that such procedures should only be devised after the mandate of Article 12 has been fully realised. Once persons with disabilities reach an equality of status with non-disabled persons, it is only legitimate that the protection extended to the non-disabled vulnerable persons is also extended to them. At present, the mandate under Article 12 has not even been seriously inaugurated, let alone realised. There is in fact a fair body of writing that is expressing anxiety on the adverse consequences of dismantling protection regimes of substituted decision-making and compulsory care. In this situation, to speak about providing protection to persons with disabilities on an equal basis with non-disabled persons seems premature. It would be strategically wiser not to speak of such equality of protection until the mandate provided by Article 12 has been realised. Today, it may be conceded much too easily, as it gives to the opponents of the Article 12 paradigm what they want without them even having to ask for it.

The authors express their preference for the harm principle as the dominant but not exclusive basis for permitting state intervention. They do not place a total embargo on state intervention in situations of self-harm. Such a total embargo, they hold, could only be imposed by adopting a libertarian stance, which is not their political position.Footnote ¹ Consequently, they allow the state to intervene in situations of imminent and grave harm to life, health or safety. In order to ensure that this concession does not allow the entry of the old paradigm through the backdoor, the authors seek to use the principle of proportionality. The authors provide some examples of proportionality that are not in accordance with Article 12, such as forced-feeding or forced medication. They speak of preventing a person from running into moving traffic or disarming a person of dangerous weapon as examples of proportionality that are in harmony with Article 12. These examples are not exhaustive and the paper does not provide a definition of proportionality. In the circumstances, it is not clear how the standard of ‘imminent and grave harm’ differs from ‘danger to self and others’ of the old paradigm or ‘the serious adverse effects’ standard of Bach and Kerzner (Reference BACH and KERZNER2010). It was possible to offer disability specific justification for permitting such intervention, which the authors have chosen not to offer. In what follows, I am putting forth that kind of reasoning.

While discussing the right to life and health for persons with disabilities, a constant refrain in the conversations at the Ad Hoc Committee and after relate to the low value ascribed to a disabled life. A number of persons with disabilities speak of how hard they need to fight for obtaining the health care that is routinely extended to non-disabled persons. To assert the value of a disabled life and to ensure similar efforts are made to save it, a failure to make such optimum effort can be termed negligence. A colleague in the University of Western Ontario shared the story of his sister who, irrespective of her survival chances, directed him to try every available treatment to save her life. His sister issued this directive because she was convinced that, unless such an obligation was created, both the medical establishment and her family would give up too soon. This lived experience of persons with disabilities could be an explanation for why it is important to place a special obligation to preserve a disabled life. Such an obligation is in accordance with the positive obligation to make a range of support measures available to persons with disabilities to exercise legal capacity placed by the authors on the state. The authors rightly distinguish between life-affirming and life-restrictive state interventions. Even in the life-affirming interventions, the choice of accepting or refusing the proffered support has been retained for persons with disabilities.

The obligation on the state to do its utmost in preserving life by providing quality health care should be uncontroversial. However, the nature of the state obligation in the context of suicide is a lot more problematic, especially as a number of mental health care professionals see attempts at suicide as demonstrating mental disorder. Clause 124 of the Indian Mental Health Care Bill of 2013 provides that any person ‘who attempts to commit suicide shall be presumed, unless proved otherwise, to be suffering from mental illness at the time of attempting suicide’. The person is then not to be punished for the attempt, but the state is obligated to provide treatment, care and rehabilitation so that such an attempt is not made again. In 2016, the relevant clause (renumbered as clause 115) was modified to replace mental illness with severe stress. The fact that such a decision may be made due to socio-economic constraint is not even entertained. Whether the decision is due to mental illness or severe stress, the person attempting suicide is to be dealt in the same way, according to the Bill. Carl Gustav Jung (Reference Jung1946) was of the view that suicide could be an autonomous choice, deserving of respect. And the clinician should help the patient to find salvation, be it in life or in death. Ernest Hemingway's decision to commit suicide after forced electro-convulsive therapy took away his ability to writeFootnote ² is often put forth as an autonomous decision to die. The fact that Hemingway (Reference Hemingway1961) wrote an open letter to the son of a friend extolling the beauty of life and the need to live it for as long as possible is offered as evidence of the suicide being non-pathological. The aforesaid opinions, unlike the Indian Mental Health Care Bill, accord respectful consideration to an individual's decision to end life.

IV. Legal capacity supporting the freedom to choose and agency to act

That it is abstract and obscure with little relevance to the daily life of persons with disabilities is the continuous charge levelled against the right to legal capacity. The right, it is contended, may at best be of importance to persons with disabilities possessed of resources, but it has little meaning for the vast majority of persons with disabilities. The paper on ‘The Right to Legal Agency: Domination, Disability and the Protections of Article 12 of the Convention on the Rights of Persons with Disabilities’ (Arstein-Kerslake and Flynn, Reference Arstein-Kerslake and Flynn2017) successfully challenges this myth by demonstrating how the deprivation of legal capacity prevents persons with disabilities from exercising the freedoms of everyday life.

An oft-quoted aphorism of common law declares that there is no right without a remedy. The ability to sleep and wake up at self-chosen times, eating foods of personal taste, playing and working in accordance with personal preferences critically influence the well-being of an individual. Notwithstanding the significance of these freedoms for well-being, none of them could be described as legal entitlements. Yet, the self-controlled exercise of these freedoms requires persons to possess legal capacity. If in possession of such capacity, the affected person can move against entities who prevent them from living their lives by their lights. Without legal capacity, persons with disabilities are at the mercy of the state and private agencies micro-managing their everyday preferences. In making the connection between the big life choices and everyday freedoms, the authors have demonstrated how the absence of legal capacity robs persons with disabilities of the agency to proceed untrammelled with their day-to-day activities. Very often, they may need to activate heavy lifting procedures required for high duty rights for ordinary personal preferences like watching late-night television and waking up late in the morning. The following anecdote was narrated by a colleagueFootnote ³ who was required to investigate the conditions of persons with intellectual disabilities living in state institutions.

In order to assess the everyday freedoms available to persons with intellectual disabilities, the team of human rights defenders inquired about the beverages preferred by the inmates. The staff assured them that the inmates could make no choices and had no preferences. Therefore, they drank whatever was provided to them. The human rights team was not convinced and asked the staff to provide them with cups of tea and coffee with straws. They offered the inmates first a sip of tea and then coffee. When the second sip was offered, the inmate only took it from their preferred beverage, refusing the drink they did not like. It was only after this practical demonstration that the institution administrators were forced to recognise that an intellectual impairment in no way hindered persons with even severe disabilities from having preferences and making life choices.

It is often believed that substituted decision-making arrangements are not a barrier to persons with disabilities accessing necessities. The restrictive manner in which persons with disabilities’ choices are controlled can be appreciated from this Hungarian case in which the purchase of a personal computer by a person with psychosocial disabilities under plenary guardianship was agitated right up to the Hungarian Supreme Court. The guardian confiscated the personal computer from the person with psychosocial disability because the computer had been purchased without obtaining the guardian's permission. The person with disabilities agitated against this action of the guardian in the courts. Even when some of the lower courts held for the person with psychosocial disability, he could not regain his personal computer as the Supreme Court of the country ruled for the guardian.

The Indian Contract Act denies legal capacity to minors and persons with intellectual and psychosocial disabilities if, by reason of their mental impairment, they are unable to understand the nature of the contract or its impact on their interests. Any contract in breach of this prohibition has been held to be void ab initio. This prohibition does not apply when the contract is for necessities. However, what purchases of goods and services are considered necessities and hence permissible are not matters that are within the control of the person with a disability. Once a protection is extended to a group, such as persons with disabilities, it becomes impossible to shake it off or to refashion it in accordance with an individual's personal needs. Such customisation is only possible when the legal capacity of the person with a disability is recognised. Article 12, in recognising the legal capacity of all persons with disabilities, is not denying protection; rather it is according persons with disabilities the autonomy to tailor that protection in accordance with their will and preferences.

Iris Marion Young (Reference Young1990), whilst elaborating on the five faces of oppression faced by marginalised groups, included cultural imperialism as one face of oppression. The face is oppressive because all members of a group are ascribed certain stereotypical traits and labelled accordingly. It does not matter that the oppressed do not perceive themselves as such. The dominating gaze just looks through them. Even to be noticed by the oppressors, the oppressed are required to perform at four times the quality expected from those belonging to the dominating group. Of course, the downgrading is explained on grounds of merit and the power dynamics stay camouflaged. And the ableist logic is internalised by persons with disabilities even before it is realised.

The skill of making choices and communicating preferences begins with everyday routine choices. When even these are not allowed to a person, then, like the unused muscle or limb, the decision-making skill starts to atrophy. And this atrophying, caused by social barriers, is then presented as individual inadequacy. The authors, by exposing these power dynamics that impede individual choice-making, suggest strategies to break out of the stranglehold of stereotype and stigma.

V. Prohibiting unilateral intervention and the Article 12 obligations of obtaining consent

This response paper, like the four essays to which it is responding, has repeatedly made the connection between legal capacity and personhood. In the previous section, I elaborated upon agency and the freedom to make choices. The concept of agency is largely, though not exclusively, about acting to realise one's desires; consent is granted or refused to the proposal of another. There is an evident element of agency to what one gives consent or refusal to. Agency is the assertion of personhood by the self, whereas the seeking of consent is the recognition of personhood by the other, as others seek consent on any matter from persons and not things. The denial of legal capacity resulted in persons with disabilities being objectified, and it is this process of objectification that is being reversed by putting in place negotiation protocols to extricate consent from legal capacity (Brosnon and Flynn, Reference Brosnan and Flynn2017). This task of extraction is being done by particularly focusing on matters of consent in sexual relationships and medical treatment. In both situations, the absence of consent renders the intrusion criminal. Sexual relationships without consent is rape and medical treatment without consent is assault. That neither a sexual nor a therapeutic relationship should be initiated without consent is undeniable. What is a lot less certain is whether such conversation should begin from these relationships and whether it should stay limited to them.

In the previous section, a connection was made between the upper-end assertion of agency and day-to-day decision-making. The fact that upper-end legal-capacity ammunition had to be spent for day-to-day non-legal transactions demonstrated why legal capacity was required to ensure agency. On analogical reasoning, in order to ensure that consent is obtained for higher-end transactions, it is important to begin from the lower end. Thus, for example, before consent is obtained for either administration of medication, surgical or other treatment, it is important to develop protocols for entering the patient's room, undertaking personal examination, providing support for cleanliness and hygiene. It is necessary to insist that permission be sought and consent obtained for every act that intrudes unto the private space of the person with a disability. People are emboldened to commit greater wrongs once lesser transgressions are tolerated. A policy of zero tolerance, especially of lesser wrongs, could allow for more safe spaces to emerge. Such a strategy would also be warranted by judicial interpretations that found electro-convulsive therapy to be non-invasive, as electric current could be administered without entering inside the body. The Indian Mental Health Care Bill has introduced a provision that requires ambulance services to be provided for persons with mental illness on an equal basis with persons with physical illness. This legal provision has been introduced along with provisions on compulsory care. That persons with physical illness are transported posthaste to hospital but can also seek discharge against medical advice is missed. A person with a physical illness can sue the doctor or the hospital for battery if he is administered medication without full and informed consent. The family members of a person with mental illness, on the other hand, can be routinely asked to administer medication by mixing it with the person's food. Seeking permission and obtaining consent can only become the default mode of operation when it is demanded all the time.

It has often been said that women with disabilities are subjected to patriarchal prejudices without the pedestal. If women are seeking to escape the stranglehold of beauty, women with disabilities wish to enjoy their unique bodies and minds. Both are handed out verdicts without so much as a by your leave. One is required to be beautiful and the other forbidden. Both women and women with disabilities seek ownership of their bodies. Neither is able to obtain it. Pregnancy is often retained or not with little significance accorded to the woman's will in the matter. A rare case, which was battled right up the Supreme Court in India, related to a young woman with intellectual disability who was an inmate of a women's protective home in the north of the country. The woman was allegedly raped and became pregnant. The protective-home authorities were of the view that the woman did not have the cognitive capabilities to rear the child and hence an abortion was in the best interests of all. The protective-home authorities applied to the High Court of the state to obtain permission and the High Court after seeking the opinion of two separate medical boards ordered the abortion. The woman did not agree with the High Court order and kept on insisting that she wished to continue with the pregnancy. Since her consent had not been obtained, she relied upon the CRPD and appealed to the Supreme Court of India against the High Court order. The Supreme Court overturned the High Court order and the woman was able to carry the foetus to term.Footnote ⁴ People who visited her after the birth of the baby reported that she was taking good care of both the baby and of herself. The woman who was an orphan told the visitors that she kept the pregnancy because, with the baby, she now had a family. The doctors and the lawyers involved in the case saw the matter either from the standpoint of her intelligence quotient or that the pregnancy was a consequence of a sexual assault. The fact that the woman wanted to continue with the pregnancy regardless of how the child was conceived was accorded no importance by the doctors, lawyers and the judges in the High Court. Similarly, no significance was given to her refusal of the abortion. Nobody thought, at any point, that she should at the very least be consulted on these decisions that so vitally affected her life. The fact that she got what she wanted was because she was lucky enough to have a lawyer who believed in both the text and the spirit of the CRPD and who then worked hard to ensure that she got her day in court. The case powerfully shows that, more often than not, individuals best know what is good for them. Hence, their consent should necessarily be obtained in all matters that affect them.

VI. Conclusion

In the introduction to this response piece, I drew attention to the fact that all four authors and myself are on same side of the ideological divide. I found this agreement to be of great assistance in exploring the various layers of the new paradigm. This engagement also brought home the difference between an adversarial and companionable dialogue. An adversarial conversation is about winning, whereas a companionable chat is about discovery and understanding. One is willing to risk an adventurous exploration because friendly support is close at hand. For the new paradigm to strike root, more such friendly conversations need to happen and adversarial skirmishes need to be avoided because they do nothing more than exhaust energy. To win more adherents for the new paradigm, the justification for the paradigm and also the mechanisms of implementation need to be strengthened – an enterprise that is better done with allies than opponents.

Reading the research papers and writing my own response has also caused me to face the fact that, even though the authors and I are advocates of the new paradigm, we were at one point trained in the old paradigm and that training occasionally gets a hold on us. The proponents of the new paradigm need to be alert to this susceptibility and closely scrutinise the phenomenon each time it entraps us. These susceptibilities are the overlap between the old and the new paradigm, and may help in reaching convergence and consensus.

Lastly, each of the papers in this Special Issue has drawn upon feminist writing to flesh out the new paradigm. The piece on consent has relied upon feminist writing even as it has differed from a body of writing. Amongst the most singular contributions of feminist writing has been that it has blown the cover on the privileged position accorded to scholastic neutrality. When scholars admit to be adherents of a new paradigm, it is important for them to acknowledge that political position. A new paradigm cannot be advanced through neutrality. When scholarship is advocating a particular position, it needs to say so if it is not to be accused of being sly or surreptitious. Scholars do and should make alignments. The new paradigm of legal capacity is speaking against the power status quo and for the disempowered underclass of persons with disabilities. To achieve the results it desires, scholarship needs to feed advocacy in an open and forthright manner. The papers in this Special Issue have selected critical components of the right to legal capacity and suggested a CRPD compliant way of reflecting on them. This paper aims to inaugurate the process of reflective responses from other interested scholars and advocates.