Amita Dhanda Gabor Gombos
It has been long contended that human rights circumscribe state power and empower the citizen. It is these motivations which dictated the adoption of the Universal Declaration of Human Rights and the Conventions on Civil Political Rights and Social Economic and Cultural Rights. The rights guaranteed by these general Conventions were deemed insufficient to address the discrimination faced by the more vulnerable populations; hence Convention on Elimination of Racial discrimination (CERD) and Convention on Elimination of Discrimination against Women (CEDAW) were adopted to eliminate racial and gender discrimination. The protections required by a child are not the same as an adult; consequently the Convention on the Rights of a Child (CRC) was adopted to address the concerns of the child. In further acknowledgement of the different needs of specific populations, along with the recognition that certain populations may require different mechanisms to fulfil the same universal needs, the Convention on the Rights of Persons with Disabilities (CRPD) has been recently included in the human rights pantheon.
The thematic Conventions were an acknowledgement that discrimination was not a uni-dimensional experience. This acceptance of the many layers of discrimination however did not resolve the question: how should such like discrimination be addressed and eliminated? These questions of multiple discrimination have arisen both in the context of women and children; in this paper we limit our attention to children and examine how the concerns of children with disability - a constituency which encounters multiple discrimination, has been addressed by the CRC and the CRPD. To this end, we firstly examine how the rights of the child have been constituted in CRC and what are the guarantees extended to children with disabilities. We next elaborate on the manner in which the issue has been addressed by the CRPD; and lastly we compare the two approaches and ponder on the questions raised by the similarities and differences of the two human rights Conventions.
II The CRC Paradigm of Rights
As a general rule the CRC recognizes every human being below the age of eighteen years to be a child. Unlike the other human rights Conventions, CRC is not just an articulation of the duties of the State and the rights of the Child. Rather it spells out the rights of the child in relation to the world of adults. This adult world consists of: the parents and extended family of the child and the State. Whilst the parents and the community are designated as the primary caregivers; the State stands in as guarantor, if the primary caregivers either fail or are unable to, perform their duties. In doing these duties the best interest of the child is required to be a primary consideration and they are to be performed consistent with the evolving capacities of the child.
“Best interests” is how the adult world be it community or State perceive the concerns of the child; whilst “evolving capacity” relates to the child’s view of the matter. CRC uses both parameters; but in the main allows best interests to trump evolving capacity. This is the case per se for the human being who has been defined as child in the CRC. There are no questions being raised here on aggravated vulnerabilities. The issue of special needs comes to the fore in article 23 where CRC addresses the rights of children with disabilities. It is important to note here that the article accepts “that a mentally or physically disabled child should enjoy a full and decent life in conditions which ensure dignity, promote self –reliance and facilitate the child’s active participation in the community”. The rest of the article speaks of providing subject to the availability of resources special care to children with disabilities. This article speaks of social participation and individual development of persons with disabilities but in a manner where the children with disabilities are passive recipient of support and assistance. It could be rightfully contended that Article 23 was included to incorporate the special needs of children with disabilities; the inclusion of the article in no way meant that the other principles of CRC were inapplicable to children with disabilities. However the implementation of CRC by State Parties, as evidenced by their reports to the treaty body, has shown that the concerns of children with disabilities have only been addressed in this article; the impact of the other articles of the Convention on children with disabilities finds no mention in the reports of States Parties. This was the case even when Article 23 mentioned education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities as areas in which children with disabilities have entitlements . Therefore to expect that States Parties shall launch special initiatives to promote the participation rights of children with disabilities, or accord recognition to their evolving capacities, in the face of the general paternalistic outlook of CRC and the silence of article 23 on this count, seems to say the least, unrealistic.
Even as the Convention is titled as the Convention on the Rights of the Child, it is more an instrument which has detailed State and community duties towards the child. A number of articles have recognized the rights of the parents and community of the children, instead of the children themselves. With an overarching emphasis being accorded to the best interests’ principle, children in the main emerged as helpless, immature beings. And though the inclusion of the evolving capacity of the child and the right to participation seemed isolated notes in the CRC; it is their inclusion which kept open future possibilities for the creation of a tune in the children’s own voice. It is these isolated notes which the rule the expression of child rights in CRPD.
Article 23 had been incorporated in the CRC with the understanding that the article would give to children with disabilities that trifle extra they may require to be at par with non disabled children. However as already mentioned this effort of same and different did not work out and the concerns of children with disabilities were ghettoized in article 23. Further the special measures in article 23 expressed the aspiration of inclusion and participation without specifying the mode by which it should be carried out.
Insofar as the needs of children with disabilities were not the same as those of adults with disabilities the need for a explicit expression of their concerns was acknowledged. In order to prevent the rights of children from either getting relegated to a single article or to get lost in the mainstream the CRPD adopts a twin track approach. This approach results in the treaty carrrying a stand alone article (article 7) on the rights of children with disabilities, along with suitable references to children with disabiliites in other substantive articles, where the negotiating ad hoc committee found justification for doing so. This approach gives recognition to both the sameness and the difference needs of children with disabilities and thus provides normative guidance on substantive non-discrimination requirements with respect to the various rights enshrined in CRPD.
Again in contrast to the CRC, the stand-alone article relating to children with disabilities provides assistance to the children themselves rather than to their caregivers. The claims of the child have been similarly centered in the other articles of CRPD. Thus Article 16 (Freedom from violence, exploitation and abuse) requires States Parties to ensure gender- and age-sensitive assistance and support to avoid, recognize and report exploitation.
The CRC expressly prohibited discrimination on the ground of disabilty, however this merely non-discriminatory approach proved insufficient to enable equal enjoyment of rights and fundamental freedoms for children with disabilities. This is because solely refraining from negative differential treatment does not help removing the barriers that cause disability; the lowering of such barriers requires more active measures of inclusion, such as reasonable accommodation. A reference to chlidren with disabilities in the CRC affirmed the sameness demands of children with disabilities but failed to recognize their different needs.
This twin tracking clearly expresses that the committee did not feel satisfied with the „mere fixing” of the failure of CRC to provide effective protection and promotion of the rights of cwd by either adding one child specific article to the new treaty or by only mainstreaming children with disabilities into the bulk of the convention. There was need for a new approach. Such an approach was possible in CRPD because the Convention reconstituted the human and in the process changed how fundamental rights like individual autonomy, dignity, equality need to be understood . This new image of the human allowed for the right to support and to reasonable accommodation to be guaranteed without negating a person’s capabilities to exercise his or her rights.It is this reconstitution of the human which has allowed the question of what is a child (with a disability) to be reconsidered.
Children without or with disabilities may and do require support in a number of areas of life.Adults without disabilities have been traditionally expected to act independently as mature human beings without seeking any support or accommodations. However adults with disabilties expressly seek support and reasonable accommodation because without such support and accommodation de facto equality cannot be reached. Children with disabilities are at the intersection of persons with disabilites in general who may need support because of disability and children in general who require age and maturity sensitive assistance and accommodations. Access to support is crucial for both adults with disabilites and non-disabled children not only to execute their self-determined decisions and choices but also to reach their decisions. Personal autonomy also entails the right to make own choices and to act accordingly. International human rights law had interpreted individual autonomy as something that is exercised by independent individuals,and consequently excluded all those who may require support from other people to realize their autonomy. Independence was seen as a given rather than a goal that could often be achieved only through interdependent support mechanisms. CRPD by recognising interdependent human existence as a valid and legitimate framework to enjoy and exercise all fundamental rights and freedoms also shifted the paradigm on how to handle children with disabilities in particular and children in general.
Non-discrimination in general is both a general principle in CRPD and an overarching aspect throughout the substantive articles in the convention. The preamble gives due recognition to the fact that certain groups of persons with disabilities face multiple discrimination, here age-based discrimination is expressly mentioned. Non-discrimination of children with disabilities relative to children in general also finds notice in the Preamble. The stand-alone article on children with disabilities, article 7 reiterates this non-discrimination provision. The rest of the child-specific article reiterates two of the guiding principles of CRC: the best interests of the child and their evolving capacities.
At first sight nothing more has happened in CRPD than the rights of the child enshrined in the CRC were incorporated into a non-discrimination framework without challenging the image of the child adopted by the child rights convention. Nevertheless, a closer study of CRPD, with a particular emphasis on the twin-tracking and on the way how overarching principles such as individual autonomy have altered the concept of the evolving capacities shows that in fact a new image of the child appears in the first human rights treaty of the new millennium.And this shall not stay without an effect on how human rights discourse shall look at children whether with or without disability.
Respect for individual autonomy plays a central role in CRPD. In the case of children with disabilities this is formulated in the context of the evolving capacities of the child. Article 7 paragraph 3 fills this principle with a dramatically new content. States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.”
What the disability rights treaty does here with the evolving capacities of the child is, in our view, no less than revolutionary. The general paradigmatic shift in CRPD to give full recognition to the fact that rights can be enjoyed on an equal basis with others presupposes the right to support, assistance and accommodations demanded the negotiating committee to provide with both disability and age-appropriate support. This combined criteria on assistance reflects the social model of disability that has been the basis for the treaty: It is not only the impairment alone that creates barriers to equal participation and full and equal enjoyment of rights but the interaction between the individual with an impairment and the society at large results in disabled life. Age is not a mere biological factor; it is also a social construct. Providing only one of the two types of assistance (disability or age specific) would be meaningless as could not adequately address the barriers created by the combination of age and disability of the child.
CRC does not provide with any sort of assistance to the child to realize their evolving capacities. CRPD does not create new rights but provides this assistance. The situation thus is that for children with disabilities both disability and age-appropriate assistance would be required under international human rights law; whilst children without disabilities would be left to realize their evolving capacities without having the right to age-appropriate support. Equality between all children would require an interpretation of evolving capacities of the child and the right to realize them in such manner that age-appropriate assistance be seen as an entitlement of all children.
One of the inherent dilemmas in the field of child rights is the dilemma between protection and promotion, paternalism and participation of the child. Children are clearly growing human beings; their major task is to develop their capabilities to realize their full potential. While paternalism can be effective in protecting the child from abuses, it has no tools to enable the child with experiences from which they can learn and grow. This latter can be achieved if the child is seen more than just an immature and thus vulnerable person, i.e. the child needs to experience that they are agents in their matters. Paternalism acts against the active involvement and participation of the child in matters affecting their lives. CRC relies on the principle of the best interest of the child but the recognition of their evolving capacities remains an unfulfilled promise.
Judges, law enforcement professionals, child welfare administrations may find difficult to find a healthy balance between the best interests of the child and giving due weight to the child’s views in accordance with their age and maturity. Especially when the child’s will is in contradiction to the adults’ expectations the two principles rather compete than complement each other and the evolving capacities of the child can hardly win this competition due to the profound power imbalance between the authorities representing the “legitimate” adult views with authenticity given by the law. Thus, in a situation of conflict between child and adult, it seems safer, easier and far less risky to act in the “best interest” of the child and ignore the child’s preferences by a simple reference to its inadequate maturity.
The lack of any provision on age appropriate support in CRC at best relegates evolving capacities to individual concessions. On a case by case basis the maturity of the child can be assessed and if the child is found mature enough, his/her preferences are given due weight, otherwise a decision is made in his/her best interest. In case of a conflict between the child’s preferences and their alleged best interests, it is the latter that will guide the authorities. Thus while the best interest principle in CRC is an overarching one, evolving capacities remain in the individual domain without any clear normative consequences. The effective enjoyment of evolving capacities require more than a vague recognition and the CRC falls short in elaborating on what this more should be.
Only when (disability) and age-appropriate assistance becomes a right implying obligations on behalf of the authorities to provide children with such assistance, the chances that the child’s views will not be ignored and decisions contrary to the child’s wishes will not be taken routinely are significantly enhanced. This is the approach adopted by the CRPD.
The best interest and the evolving capacities principles can find harmony and just treatment only if the disproportionate power asymmetry between children and those around them is removed. CRPD does this by placing the child in the center rather than their parents, families or authorities bearing responsibilities towards the child. While CRC addressed the paternalism and participation dilemma mostly through the best interest principle, CRPD has reinterpreted the principle of evolving capacities through making age and disability appropriate support a right.
The CRPD has introduced the strategy of double empowerment to deal with the double discrimination faced by children with disabilities. Further the Convention has questioned the pejorative attributions towards support by allowing for a person to seek support without loss of personhood. Insofar as the CRPD addresses the question of child participation in structural terms it offers a more empowering paradigm to children with disabilities. It is hoped that this strategy of structural empowerment shall not be restricted to children with disabilities alone; and child rights activists will engage with the CRPD paradigm to enhance the participation rights of all children.
Professor of Law NALSAR University of Law Hyderabad
 Senior Advocacy Officer Mental Disability Advocacy Center, Budapest Hungary
 This rule does not apply according to article 1 when according to the law applicable to the child majority is attained earlier.
 See article 7 (3).
 Article 16 (2) 2. States Parties shall also take all appropriate measures to prevent all forms of exploitation, violence and abuse by ensuring, inter alia, appropriate forms of gender- and age-sensitive assistance and support for persons with disabilities and their families and caregivers, including through the provision of information and education on how to avoid, recognize and report instances of exploitation, violence and abuse. States Parties shall ensure that protection services are age-, gender- and disability-sensitive.
 Ref to your Twin Track paper
 Article 3 (General Principles) (b) Non-discrimination;
 Preamble (p) Concerned about the difficult conditions faced by persons with disabilities who are subject to multiple or aggravated forms of discrimination on the basis of race, colour, sex, language, religion, political or other opinion, national, ethnic, indigenous or social origin, property, birth, age or other status,
 Preamble (r) Recognizing that children with disabilities should have full enjoyment of all human rights and fundamental freedoms on an equal basis with other children, and recalling obligations to that end undertaken by States Parties to the Convention on the Rights of the Child,
 Article 7(1) States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.
 Article 7 (2) In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.
 See in next section
 Preamble (n) Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices,
Article 3 (General Principles) (a) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons,
 Article 3 (General Principles) (h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.
As an active effort at integration we would be requesting you to not just be the speakers of your session but also be discussants and facilitators of other sessions. The consultation thus is prompted by the need to make the linkages between various areas of child rights and consequently acquire a rounded understanding of the field.
Coupled with the problem of issue specialization is the difficulty of sectoral perspective which contributes to a fractured understanding of child rights. There is often a chasm between the governmental and nongovernmental between the academic and activists perspective towards child rights. In order to aid understanding, as only with such understanding can any kind of consensus be reached, we have tried to provide representation to varied perspectives at this consultation. Excep tfor students from NALSAR, we have not invited children themselves at this consultation. Such an effort could be made on the strength of the understandings reached at this Consultation.
Consultation Paper drafted under the auspices of the National Trust. The opinions expressed in the paper are the views of the paper writers and not of the National Trust.
Harmonizing National Laws with CRPD: Suggested Amendments to the National Trust Act 1999
Amita Dhanda●● Gabor Gombos♦♦
The National Trust Act was enacted in 1999 after a long gestation period. The Act was proposed to address the apprehension of parents (primarily of persons with intellectual disability) on the future of their wards after them. However by the time the NTA was enacted, the protective motivations of the original proposal were diluted with the inclusion of autonomy and self advocacy claims.
The 1999 Act acknowledged that a guardian to manage the affairs of a person with disability could not be appointed merely by looking at the nature of the disability; instead the statute required that the needs of the individual person with disability should be examined and a guardian appointed only if desired. This recognition of limited guardianship in the National Trust Act 1999 was one of the forward looking examples that the Ad Hoc Committee for the Drafting of the Convention on the Rights of Persons with Disabilities was apprised of whilst it deliberated on the legal capacity of persons with disabilities.
Even as the National Trust Act 1999 adopted a forward looking approach, its provisions have been overtaken by events. The United Nations Convention on the Rights of Persons with Disabilities, which has been negotiated and drafted with the active involvement of persons with disabilities from all over the world, alters what States Parties need to do for persons with disabilities . India has signed and ratified the Convention on the Rights of Persons with Disabilities (hereinafter CRPD) and the CRPD having obtained the requisite number of ratifications came into force on 3rd of May 2008. In line with our international obligation we are now required to bring our laws in conformity with the international Convention. It is important that in bringing the NTA in conformity with CRPD we are guided by both the text and the spirit of CRPD. It is also necessary that the suggestions for change are made by reading the CRPD as a whole and by placing the NTA within the context of Indian statutory law.
We have been guided by these considerations in formulating the following proposal for consultation.
II Reconsideration of Underlying Principles of NTA
The NTA regime is based on the presumption that some persons with disabilities, due to the nature of their disability, are incapable of making their own decisions; hence they do not possess legal capacity; and thus special protective arrangements need to be put in place for them. Consequently, the statute makes caretaking arrangements for the named disabilities, proceeding on the presumption that such arrangements are only required for those disabilities.
The CRPD questions these presumptions of the NTA insofar as it recognizes that all persons with disabilities possess legal capacity and are persons before the law. The CRPD also acknowledges that some persons with disabilities may require support for the exercise of their legal capacity; it therefore places an obligation on States Parties to provide such support to persons with disabilities. However the fact that some persons with disabilities need support for the exercise of their legal capacity is no reason to deny the existence of their capacity. Thus the CRPD sets up a universal model of legal capacity whereby all persons with disability are recognized to possess legal capacity. And support arrangements need to be so put in place, that they can be accessed or made available, as required, by persons with disabilities. CRPD recognizes that protection based on legal incapacitation often results in a further barrier to equal participation in society; it therefore introduces an enabling legal framework which supports equal status and safeguards against abuses. This recognition of universal legal capacity in the CRPD mandates that: the NTA should explicitly recognize the legal capacity of persons with disabilities; and national laws which deny legal capacity of persons with disabilities are repealed. The CRPD would also require recognition to and facilitation of support networks. The support networks would be needed so that persons with disabilities are in no way disadvantaged in the exercise of legal capacity.
It is important to note that whilst the CRPD sets up a regime of universal legal capacity by recognizing the legal capacity of all persons with disabilities; the NTA is a law with restricted application because it addresses the capacity deficits of certain named disabilities only.
In the light of the above the Consultation would need to address the following questions:
· How should the NTA be amended to incorporate the CRPD model of universal legal capacity?
· Should the model be only extended to the named disabilities?
· Or should the NTA be amended to make this model available to all disabilities?
· What other amendments should be introduced in the NTA to bring the statute in conformity with the CRPD?
In what follows we provide reasoned answers to these questions
Suggested Amendments with Reasons
The NTA should introduce an Express Provision Recognizing Universal Legal Capacity and the provision should state that
· All persons with disabilities have full legal capacity.
Reasons : Section 12 (3) of the NTA challenges the inextricable association of incapacity with some disabilities; it therefore requires that before appointing a guardian for a person with the named disability, an enquiry on the need of such guardian should be made; and a guardian should be appointed only if upon enquiry such guardian is considered necessary. The NTA accepts that in a particular case a persons with disability could be found to possess capacity; but it does not presume that persons with disability possess capacity like non disabled persons.
The general position of the law, as exemplified especially by the Contract Act 1872, is that all adult persons who have crossed the age of minority are presumed to possess legal capacity. Thus any person who alleges lack of capacity is required to prove it. This presumption does not extend to persons generally found in a state of unsound mind. In their case the law presumes lack of capacity and the person contending presence of capacity is required to prove it. Whilst legislation has restricted the presumption of lack of capacity on persons who are generally of unsound mind; the courts have not insisted on the requirement of generality. Once a person has been found to be with intellectual disability or living with mental illness, they have presumed that such person living with mental illness or intellectual disability lacked legal capacity.
The CRPD requires that this overarching presumption of lack of capacity associated with persons with disabilities should be displaced and they should be treated on an equal basis with others. To fulfill this mandate of the CRPD it is necessary that the NTA states all persons with disabilities have full legal capacity.
The NTA provision should expressly state that Support Does Not Diminish Capacity
· This legal capacity is in no way diminished if a person with disabilities sets up a support network to assist him in the exercise of this legal capacity.
Reasons: Once a person with disabilities is found to lack legal capacity the law handles this situation of incapacity by appointing a guardian to manage the person and property of the person with disabilities. The guardian then assumes the persona of the incapacitated person and takes all decision on his or her behalf. If the guardian is viewed as support, it is necessary to note that this support is not extended by the existing Indian law, without a finding, that a person with disability lacks legal capacity. Art 12 of the CRPD allows for support to be provided without a finding of incapacity. For NTA to provide support without diminishing capacity it is necessary that the new section should expressly state that accessing of support by a person with disability in no way diminishes their legal capacity.
Role of National Trust in Providing Support
This new provision should state the nature of the responsibility assumed by the National Trust and to that end state:
· The National Trust shall accord recognition to support networks and offer assistance to persons with disabilities in setting up such networks.
Reasons: The CRPD places a duty on State Parties to provide support to persons with disability to assist in the exercise of their legal capacity. Insofar as the National Trust is an autonomous statutory body which is supported by the government; and the NTA is aimed at promoting both the autonomy and independent living of persons with disabilities; it may be appropriate to fulfil this mandate of the CRPD by requiring the National Trust to offer assistance to persons with disabilities to set up support networks. This assistance could be provided in two kinds of ways: one, the National Trust could through its Local Level Committees accord recognition to the support networks that are created by persons with disabilities; and two, where it could assist persons with disabilities to set up the support networks.
The National Trust would need to provide this assistance to enable the paradigm of supported decision-making to displace the long subsisting familiar paradigm of guardianship or substituted decision-making. Recognition in the law alone will not without more dispel the long subsisting prejudice against persons with disabilities. For that prejudice to be dispelled, it is important that persons with disability should be seen to in fact function in society. For such functioning to actually happen, it is important to put in place procedures, which would lower the barriers against persons with disabilities. The recognition of the support network of persons with disabilities by the National Trust could be one such procedure.
Whilst some persons with disability would be able to put in place a support network on their own and may only need the National Trust to assist them by recognizing the Network, others may require the National Trust to help them in setting up the Network. The inclusion of this provision in the NTA is being suggested to enable the Trust to devise mechanisms by which the shift from a paradigm of Substituted Decision-Making to a Paradigm of Supported Decision-Making can be made. Furthermore the active involvement of the Trust would also help put in place, the safeguards that required by the CRPD, against abuse by support networks.
Expand the Definition of Disability
The National Trust Act defines “persons with disability” to mean a person with autism, cerebral palsy, mental retardation or multiple disabilities. This restrictive definition needs to be altered.
· The”definition of disability should be altered in the NTA and the present restrictive model should be replaced with a universal model. This could be done by adopting the definition of disability incorporated in the CRPD.
Reasons: As already mentioned the definition of disability in NTA was prompted by the criterion of enhanced vulnerability. Whilst a medicalized standard of enhanced impairment prompted the inclusion of cerebral palsy and multiple disabilities; psycho-social considerations dictated the induction of autism and mental retardation. The creation of a specialized legal regime of the National Trust was also induced by the questionable legal status of the persons with the aforementioned disabilities. The need for substitute legal arrangements was especially felt by parents of persons with mental retardation because both law and practice attributed incapacity to their wards. A similar attribution of incapacity was practiced in reality towards the other disabilities. Whilst some of these were included in the NTA others were not.
The CRPD requires a stoppage of the legal attribution of incapacity against persons with disabilities thus removing a legal barrier that contributes to disability itself. Just the dismantling of the disqualifying regime in law would not alter the situation on the ground but the alteration of the law is a precondition to social change. Social attribution of incapacity is not restricted to persons excluded by the law, hence what the CRPD prompted change in the law would do is that it would bring persons with mental retardation and persons living with mental illness at par with other persons with disabilities. To make this statement is no way a denial of the aggravated exclusion and stigma faced by persons with intellectual and psychosocial disabilities. However it is aimed to emphasize that the new regime of legal capacity affords an opportunity for cross disability solidarity based on the enabling paradigm of supported decision making and this opportunity would be seized if the NTA abandons the present restricted definition and adopts a more universal definition of disability. The continuation of the present definition may cause the named disabilities to be ghettoized in exclusionary regimes.
Further the new model of legal capacity can take off the ground only if imaginative support networks are created. In order to generate the political impetus to release resources for the creation of these networks, it is important for persons with disabilities to speak in one voice. The National Trust would also be able to further the enterprise of garnering support for persons with disabilities when the human interdependence of all persons with disabilities and all humans is emphasized.
With this amendment the NTA could be recast as the legal capacity and support networks legislation for all persons with disabilities; whilst the other rights could be addressed in the Persons with Disabilities Act 1995, again, for all persons with disabilities.
Right to Participation
An express provision should be included in the NTA which states that :
· The National Trust shall devise all approved programmes in active consultation with persons with disabilities and their organizations
Reasons The CRPD requires all programs and policies for persons with disabilities to be formulated with their active participation. The National Trust has resources for initiating approved programs. The CRPD would require the National Trust to consult with persons with disabilities to identify specific areas of action to enable persons with disabilities to exercise their legal capacity and starting programs accordingly with the active participation of and in consultation with persons with disabilities.
●● Professor of Law National Academy of Legal Studies and Research, Hyderabad, NGO Delegate to the United Nations Ad Hoc Committee on the Convention on the Rights of Persons with Disabilities .
♦♦ Ashoka Fellow Centre for Advocacy and Mental Health, Bapu Trust Pune, Senior Advocacy Officer, Mental Disability Advocacy Center Budapest, NGO Delegate to the United Nations Ad Hoc Committee on the Convention on the Rights of Persons with Disabilities .
Legal Capacity and Supported Decision Making: Consultations on the Amendment of the National Trust Act
- 2 August, Bangalore
- 23 August, Guwahati
- October (to be confirmed), Chandigarh
- November (to be confirmed), Goa
The consultations will discuss a paper drafted by Amita Dhanda and myself (On the picture we are having the first discussions on the consultation while on a retreat to the Ramoji Film City). Then, based on the submitted comments and conclusions of the regional consultations a draft amendement proposal will be adopted.
The questions around which the consultation paper is organised are:
- How should the NTA be amended to incorporate the CRPD model of universal legal capacity?
- Should the model be only extended to the named disabilities (mental retardation, cerebral palsy, autism and multiple disabilities)?
- Or should the NTA be amended to make this model available to all disabilities?
- What other amendments should be introduced in the NTA to bring the statute in conformity with the CRPD?
The consultation paper recommends:
- The NTA should introduce an express provision recognizing Universal Legal Capacity and the provision should state that all persons with disabilities have full legal capacity.
- This legal capacity is in no way diminished if a person with disabilities sets up a support network to assist him in the exercise of this legal capacity.
- The National Trust shall accord recognition to support networks and offer assistance to persons with disabilities in setting up such networks.
- The definition of disability should be altered in the NTA and the present restrictive model should be replaced with a universal model. This could be done by adopting the definition of disability incorporated in the CRPD.
- The National Trust shall devise all approved programmes in active consultation with persons with disabilities and their organizations.
Initially, when we started talking to people about an oral history archive of stories from persons subjected to psychological distress and to inhuman, degrading treatments, we had to face many questions. How can such persons share their stories? Will they remember anything? Can they talk rationally? Oh, well, they are too dangerous to talk to! Will their story be aesthetic enough? etc.
The marginalization of persons with a psychosocial disability from the mainstream human rights movements and intellectual currents was evident in such queries. There was also little recognition of the fact that often our entire personhood has been robbed off by many years of using brain damaging, health compromising, violent, and harmful psychiatric treatments. The memories of those who are surviving or have survived many “doses” of shock, with or without anesthesia, has been damaged to such a degree, that telling their story becomes difficult for them.
There were also questions about the human rights of persons with a psycho-social disability: Can “mentally ill” people have civil liberties or fundamental freedoms? Will they use it responsibly? Should there not be a guardian or a spokesperson? Etc. These questions came from very reasonable and intelligent people, people who were themselves highly effective social change agents and creators of culture in our society.
Our sisters and brothers inside lock ups, solitary cells and isolation wards, tied or chained to their cots, have sordid stories to tell about rights violations. Few of us, users and survivors of psychiatry, have lived to tell the tale of lives lived inside custodial institutions, and if we have survived, it has been at great cost to our creativity, skills and abilities.
The Oral Histories Archive validates our belief that those labeled with a “mental illness” have memories, histories, personal experiences and a coherent story to tell. The Oral Histories Archive is home to the collective memory of a set of persons otherwise erased from cultural, social and political history.
The objectives of our Oral Histories Archive is multifold:
To bring before the reading public, the lives and experiences of persons who have been through a psycho-social disability, their stories of healing and recovery
To bring public visibility to the everyday violations of respect, personal dignity and human rights of persons with psycho-social disabilities
To contest and counter the harmful forces of psychiatry on the lives of users and survivors of psychiatry
To foreground the many thoughts and actions that we take on our own energies to help ourselves and people like us
To inspire and inform our activism and our work on policy, legal and human rights advocacy
To mobilize users of psychiatric services and other mental health care services in the local, regional and national context
To give substance and life context to our community publications on emotional well being
To serve as testimony of the poor and degrading quality of care experienced by users of the so-called modern institutions and mental health services in India
To provide a basis for the sustaining and life affirming quality of traditional healing practices, such as possession and trancing
We will share this invaluable collection with the community through our library and documentation center. We will also regularly publish documents, reports and try to bring them out in the form of publications and documentaries. We will mobilize user / survivor workshops and sharing groups to take our activism forward.
All of us have experienced periods of psychological distress or disturbance at some point in our lives. For some of us it may have been triggered by an event. For others it may be a persistent living experience.
During these period support from our immediate surrounding of family and peers may or may not be forthcoming. If the support is accompanied by "shoulds", "musts", or if the helper is uncomfortable "being with" distress or disturbance, the support will be less than helpful and positive. Traditional mental health services on the other hand often labels distress and disturbances as ‘illness’. This view often inhibits the positives and potentials of the human spirit. For instance, the distressed persons might be capable of supporting another distressed person or creating "works" or be capable of discovering meaning in the distress or disturbance itself.
Hamsayeh is a space for individuals experiencing distress or disturbance.
It is a living space that individuals can use to be with themselves, their distress, their God or their “voices”, without a sense of apology.
It is also a psycho-social space for individuals to be with and connect with peers. Peers are people who have had similar experiences and who have a special interest in supporting each other. Connecting with peers helps break down the sense of isolation accompanying distress and disturbance. It also evokes hope and comfort critical for insight and for making choices that lead toward healing and self-recovery.
It is a safe place. This means the space is free of lecturing, advise giving, judging, evaluating and labeling. Since, what is helpful for someone might not be helpful to someone else, so in this space, what is helpful is mutually decided between the people offering it and those accepting it.
In this sense, it is a therapeutic space, although no therapy of any kind is practiced here. In this space, there are no professionals, experts nor patients. There are fellow humans sharing each other’s experiences and “stories” while supporting one another to make positive new movements.
Hamsayeh is a peer support initiative of the Center for Advocacy in Mental Health, (CAMH) a mental health advocacy, research and training organization. It grew out of the center's interest in self-advocacy and community based alternative to psychiatry.
Address: CAMH, Plot No 9, Survey 50/4, Kapil Villa, Satyanand Hospital Lane, Opposite Konark Pooram, Kondhwa Khurd, Pune – 411048
Tel : 020-26837644/47
Date: 12th July 2008
Time: 11:00 a.m.
Venue: CAMH premises
Activity Speaker/Facilitator Time
Welcome/Introduction to CAMH & ‘Hamsayeh’, Sachin 11:00 -11:10
Introduction to Gabor Gombos, Ahmed 11:15 -11:20
Key note: Peer support group perspectives, Gabor Gombos 11:30 -12:30
The Origins of Peer Support Group Work at CAMH, Bhargavi/Ahmed 12:30 -1:00
Open Forum: Reflections, Questions & Dilemmas, Gabor Gombos 1:00 -1:20
Ritual to invoke & launch the space, Ahmed 1:20 -1:30
The launch will be followed by lunch at 2:00 p.m
Force in Psychiatry and Mental Health - an Open House Programme at Centre for Advocacy in Mental Health
June 30 – July 1 “Self Advocacy Training for Persons with Intellectual Disability”, PARIVAAR, National Institute of Mentally Handicapped, Secunderabad
July 12 “User & Peer Support Meet”, Bapu Trust, Pune
July 25-26 “Child Rights and Social Duties: A Multi –Sectoral International Consultation” at NALSAR, Hyderabad
July 31st “Changing Paradigms and Competing Influences in Physics and Psychiatry” at Department of Philosophy Central University, Hyderabad
August 4th “Speaking Truth to Power : The Institution of Human Rights Defenders” at NALSAR University of Law, Hyderabad
August 5th “Changing Paradigms in Science and Law” at NALSAR University of Law, Hyderabad
August 6 Southern Consultation on Amendments to the National Trust Act, Bangalore
Date to be finalized “Speaking Truth to Power : The Institution of Human Rights Defenders”
August 23 Eastern and North Eastern Consultation on Amendments to the National Trust Act, Guwahati
August 29 & 30 “National Care Givers' Workshop – II”, Pune
Date to be finalized “Uncertain Physics Certain Psychiatry”, Lecture at JNU, New Delhi
Sept 11 “Self Advocacy by Persons with Disabilities”, Lecture at the Annual General Meeting of the National Trust at, New Delhi
Sep.13 “Vision of Blindness: A Celebration of Blind Mathematicians”, National Blind Federation, Bhubaneshwar
Sept.15 “Vision of Blindness: A Celebration of Blind Mathematicians”, National Blind Federation, Delhi
Sept. 19 & 20 “National Users Workshop”, Pune
Oct. Northern Consultation on Amendments to the National Trust Act, Chandigarh
Date to be finalized “Speaking Truth to Power : The Institution of Human Rights Defenders” at Faculty of Law New Delhi
Nov.1 Public Lecture, Patrakar Bhavan, Pune
Nov. 7 National CRPD Meet, Bhopal
Date to be finalized Western Consultation on Amendments to the National Trust Act, Goa
Visiting Ashoka Fellow, Bapu Trust, Pune, India; Senior Advocacy Officer, Mental Disability Advocacy Center, Budapest, Hungary
The objectives of the lecture series are
- to engage with cynicism especially amongst the youth
- Discuss people’s experiences with deprivation
- Explore strategies available to challenge deprivation
- Enthuse persons especially young persons towards cause lawyering
A culture of human rights requires people who are defending the rights and warding off challenges to them. The lecture series will explore the role and functions of human rights defenders; the opportunities presented by contemporary International Human Rights law; and the threats faced by the people undertaking the task.