The Paradigm Shift on Disability and its Particularities to Persons with Mental Illness

M.ÀNGELS PORXAS ROIG

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), adopted in 2006, is the most rapidly negotiated human rights treaty. As of April 2016, it has been ratified by 168 States and was the first to which the European Union became a party. Experts, care workers, people with disabilities and scholars have claimed that the Convention sets a ‘paradigm shift’ for disability (Kayess & French, 2008). The UNCRPD does not develop new rights, but for the first time it applies existing ones to persons with disabilities and their particular lived experiences. The paradigm shift consists in moving towards inclusion of rights holders, using a social model framework that reclassifies disability as a human rights issue (Quinn & Degener, 2003). The revolution comes in how the Convention approaches disability and related issues. People with disabilities can bear a “citizenship deficit” (Casado & Vilà, 2014) due to difficulties in realizing rights, partly consequence of a system structure set up by dominant powers, which constructed the stereotype of normality on the ideal of white, able and heterosexual males (Foucault, 2009). This situation of discrimination is even more noticeable when referring to persons with a mental illness, people that encounter a high degree of stigma and inequalities in all aspects of life (Callard, 2012).

The UNCRPD is probably the most progressive human rights treaty in force nowadays, as it tackles the foundational bedrocks of the situation of inequality suffered by persons with a disability, namely segregation and stigmatization. One of the main aims of the UNCRPD is to address the structural conflict and change societal attitudes through the empowerment of rights holders. Only the promotion and protection of the right to decide will ensure full equality before the law. The issue is not anymore a matter about rights recognition but about the possibility to exercise those rights: empowerment arises as the key element (Porxas, 2015). To realize the paradigm shift proposed by the UNCRPD, it is necessary to make real the move towards a social and human rights approach.

Understanding disability: From the medical to the social model

The theories that emanate from a medical approach have in common that they identify the disability or impairment in the individual’s pathology, regardless of the broader societal and environmental situation. Thus, they search solutions through the improvement of the functional capacity of the individual mainly on a biological basis (Rioux, 2003). This model is the one that has permeated the whole legal, political and medical practice in disability issues, and particularly in mental health issues, for generations (Palacios, 2008). On the other hand, the social model approach appears as a reaction to the dominant medical models which in turn are a consequence of the paternalist positions ruling medical healthcare relations that have traditionally imposed their views and restricted patients’ autonomy. Conversely, social models understand mental, physical, intellectual, sensorial or other impairment not as a disability per se but as a society’s failure to take them into account and adapt to them, thus creating barriers and negative attitudes that trigger exclusion and discrimination. The latter, in turn, widens the inequality gap on the exercise of rights suffered by people living with a mental or a physical dysfunction. Therefore, the social model understands disabilities not just on the basis of a person’s functional diversity, but on the society’s inability to adjust to them (Palacios, 2008).

With regard to the particular case of people suffering from a mental illness, several studies exist proving that biological explanations to the cause of mental illness are not generally associated to more tolerant attitudes, particularly in studies related to schizophrenia (Angermeyer et al, 2011). However, what is clear from psychological studies on the perception of schizophrenia is that when the general population uses the term ‘illness’ it tends to refuse the subject (Read & Haslam, 2009). In addition, the same study affirms that people who support medical explanations are more reluctant to  engage in a social relationship of equality with people with these diagnoses. Originating in attitudes of rejection, this hampers the enjoyment of a full social life.  Concerning the treatment provided, the models presented also differ one from the other: the medical model is more prone to use psychotropic drugs and means of coercion as part of the treatment, while the social model promotes treatment through a higher use of human intervention and only using force as a last resort.

The concept of autonomy within the UNCRPD framework

The foregoing remarks on the medical and the social models are important to understand the spirit of the UNCRPD and the revolution intrinsic to its approach. The whole Convention is built upon the value of human dignity, the milestone of all human rights claims (Universal Declaration of Human Rights). But, particularly, equality is the bedrock principle struggled for in the UNCRPD. Equality as equality of opportunities is
indispensable for the exercise of other human rights, specifically mentioned as a guiding principle in its Article 3. Equality of opportunities requires equal chances but not equal results, consisting on the provision of reasonable accommodation. However, the
innovation of the Convention comes in the form of achieving equality of opportunities through the social model referred to above. Indeed, the real change is brought in by the
adoption of the
principle of autonomy in its full and more radical interpretation.

Autonomy is of particular significance for persons with a mental illness, whose liberty to decide is often seen curtailed by the imposition of forced treatments or involuntary hospitalization. Autonomy is mentioned in Article 2(a) UNCRPD, next to human dignity, from which we can deduce their interrelatedness. Although this principle is embedded in the overall text of the Convention, Articles 14 and 12 are its stronger expression. Article 14 ensures that the existence of a disability will in no case justify the deprivation of a person’s liberty. In those cases when mental illness implies a disability, it seems clear that the practices of involuntary hospitalization fall within the Convention’s framework.

Article 12 concerns equal recognition before the law. Its second paragraph imposes an obligation on States to grant persons with disabilities “legal capacity on an equal basis with others in all aspects of life”. The Committee for the Rights of Persons with Disabilities (Committee) – the body of independent experts which monitors the implementation of the UNCRPD – held that: “there has been a general failure to understand that the human rights-based model of disability implies a shift from the substitute decision-making paradigm to one that is based on supported decision-making” (General Comment [GC] no. 1, 2014: para. 3). This suggests that the right to legal capacity has been denied in many areas in a discriminatory manner under substitute decision-making regimes in the form of incapacitation and its guardianships executive forms.

So far, States have shown not to implement this provision. As an example, Spain, the first country reviewed by the Committee in 2011, confirms that deprivation of capacity is an instrument whereby an individual is deprived totally or partially of his/her capacity to act (Initial report on the Implementation of the UNCRPD, 2010: para. 54). One year later the Committee recommended to Spain to review its laws allowing for guardianship and trusteeship and urged it to take action to develop laws and policies to replace regimes of substitute decision-making by supported decision-making which respects the person’s autonomy (Consideration of reports submitted by State parties to the UNCRPD, 2011: para. 34) That same year, on its Act 26/2011 Spain committed to elaborate a bill to adapt legislation to comply with article 12 UNCRPD with regard to the exercise of legal capacity. However, in April 2016 this bill has not yet been passed: only minor terminological changes were carried on but not structural modifications to the incapacitation system.
disability (Tribune.com.pk)I am not aware of a country in the world without a guardianship system not based, to some degree, on a substitute decision-making process. This situation might be partly caused by the unforeseen consequences of dismantling the current and long-established substitute-decision making systematic procedures, often taking the form of guardianship.

The Committee specifically states that these practices must be abolished and States must ensure that persons with disabilities are afforded full legal capacity (GC no. 1, 2014: para. 7). The GC also pays special attention to persons with cognitive or psychosocial disabilities who “have been, and still are, disproportionately affected by substitute decision-making regimes and denial of legal capacity” (Ibid.: para. 9). Even though recognizing the difference between legal and mental capacity, it clearly states that “‘unsoundedness of mind’ and other discriminatory labels are not  legitimate reasons for the denial of legal capacity” (Ibid.: para. 13). The GC is very clear and leaves little space for interpretation using radical statements like: abolishing and never in respect to substitute decision-making regimes.

Until now, a social presumption of incapacity has arisen automatically when someone is diagnosed with a mental illness. Overcoming old paternalistic tendencies, the legal presumption in most developed legal systems is that a mental illness does per se not imply a legal incapacity. Therefore, there is a presumption of capacity of every human being. But a presumption is rebuttable and thus implies the possibility under certain circumstances of denying or restricting legal capacity. Instead, and to come at terms with the idea of autonomy within the UNCRPD, legislation should now incorporate an assumption of legal capacity. This is such a drastic change that not only legal systems need to readjust, but also more deeply-rooted sociological and psychological elements will have to be remodeled. However, while the Committee’s interpretations are aimed at clarifying the meaning and scope of certain provisions of the Convention, its statements on Article 12 have not yet been taken up by any Member States.

The implementation of the UNCRPD in relation to mental health

In the psychiatric and mental health field, the social model embedded in the UNCRPD is a revolution in itself. Even though the need for a model that takes in account social and psychological elements had been largely defended for decades (Engel, 1977), certainly it is still only applied by a minority of the professionals in this field.

Anyway, the UNCRPD has to be seen as a paradigm moment on the culmination of a progressive transition towards recognition of autonomy of persons with disabilities (including persons with a mental illness). This transition might finally transform the social and legal systems and the healthcare relationships with these collectives. The ethical and legal implications of this new approach to disability, and particularly to mental health issues, are materialized in the healthcare practice in daily challenges. Legislators, policy-makers and health professionals will have to understand the philosophy under the UNCRPD to be able to implement its model.

Reality often shows different practices including coercion, forced detention, information concealing and, very often, legal incapacitation. These practices are particularly pressing with psychotic patients. As a matter of example, in Romania there have been a number of precedents of improper confinement of individuals with psychiatric disorders. One case was brought to the European Court of Human Rights (ECtHR) (B. v Romania, 2013): it resulted in a finding of violation of the right to privacy and family life enshrined in Article 8 of the European Convention on Human Rights. Last year cases concerning persons with mental disorders and legal capacity had also been brought up to the ECtHR (Shtukaturov v Russia, 2008; Berková v Slovakia, 2009; Lashin v Russia, 2013) resulting in violations of the rights to privacy and the right to liberty and setting higher safeguards on deprivation of capacity and restriction of liberty due to a mental illness. Some State practices that have also been criticized, among others, are sterilization due to a disability (Gauer and Others v France, 2012), access to a fair trial (Stanev v Bulgarie, 2012) or parenting rights of disabled parents, with a very recent landmark case (Kocherov and Sergeyeva v. Russia, 2016) on this issue.

Conclusion

There is now a need to properly implement the social approach to disability, in particular as regards mental health. An ongoing discussion is taking place about the urge to delimit the meaning and to further apply the autonomy principle in this context. Some case law in the ECtHR even spoke of a right to autonomy, being the Evans judgement the first time were the Court used this wording (Evans v. the United Kingdom, 2007). However, there are not yet enough cases on this line and the content of ‘autonomy’ is not clearly defined to affirm that there is a right to autonomy.

In my opinion, we should consider and weigh two different approaches: on one side, that which sees autonomy as the only valid path towards human dignity for persons with disabilities and incompatible with any kind of intrusion in their decision making processes; on the other side, an approach that considers the later view as an individualist interpretation of autonomy, perhaps triggered by the liberal western society values. From the latter point of view, fears arise that if we suppress incapacitation and its derived forms of substitute-decision making some persons affected by these measures might found themselves in a helpless situation and be abandoned.

When the deinstitutionalization movement took place in the 50s – namely the dismantling of long-term or permanent mental health care in isolated locations and the closure of the main psychiatric institutions across Europe – in most countries the alternative community settings were not yet efficiently set up and lots of persons who were deinstitutionalized ended up in jail or living in the streets (Lamb & Bachrach, 2001). High standards nearly impossible to achieve in daily life are not a solution, rather they stand as ‘ideals’. Instead, progressive implementation is needed. It is not sufficient not to neglect anyone’s rights, neither to give full legal capacity to people who might not be able to satisfactorily exercise it. Looking at the autonomy-based social model approach from a human rights perspective means adopting person-centered policies and legal decision making. On this line, capacity assessments should also be reviewed, and I advocate for a case-by-case assessment independent of diagnosis and not only based on functional capacities. This is specially pressing when talking about mental disorders, that are often of permanent or chronic character but which might not manifest in a continuous form. In addition, when capacities are assessed it becomes appropriate to take into account dimensional aspects rather than just clinical ones.

The development of rights in this area is taking the path towards the recognition of a right to personal autonomy and a human right to legal capacity. In my opinion, the further delimitation and implementation of these future rights should be always interpreted in a contextual and relational dimension.

Autonomy is synonymous neither with individuality, nor with complete lack of support regarding decision-making, because equal legal capacity of everyone does not mean equal capacity to exercise it.

MEET THE AUTHOR

M.Àngels Porxas Roig (E.MA 2011/12) is a PhD Fellow at the Bioethics and Law Observatory and researcher at the University of Barcelona. She works on bioethics and legal issues concerning the implementation of the UNCRPD in relation to mental health. All opinions expressed here are those of the author.

 

 

 

 

 

 

 

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