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CATALYZING SELF ADVOCACY

An Experiment in India

GABOR GOMBOS

AMITA DHANDA

Contents

Preface

1 Introduction: The Silenced Other Voice


1.1 Particularities of psychosocial disability
1.2 Selective listening to the user/survivor voice

How to Design a Six Month Self Advocacy Promotion Program?

2.1 Strengths and Weaknesses of the Multi-dimension Plan

3 Preparing the Ground for Self Advocacy


3.1 Provision of Peer Support: Activities with users/survivors
3.1.1 Users/survivors at Bapu Trust
3.2.1 Hamsayeh
3.1.3 Self-Advocacy: The Art of Negotiating; The Politics of Dignity"

4 Capacity Building of Self Advocates and Cross Disability Advocacy


4.1 Building Leadership among People Living with Mental Illness: The National User
Workshop

4.1.1 Conceptual preparation


4.1.2 The first day
4.1.3 Day 2 and 3
4.2 Assisting Self Advocacy in Persons with Intellectual Disabilities
4.3 Brainstorming with the ZTRT members
4.4 Vidyasagar Chennai

5 Knowledge Building and Awareness Raising


5.1 With the Bapu Community
5.2 National Mental Health Care Givers Workshop
5.3 The National Trust Knowledge Workshop

6 Engaging with the Academy : Lectures at NALSAR, HCU and JNU


6.1 Self-advocacy and Paradigm shifts in physics, psychiatry and the law
6.2 Speaking Truth to Power: Lecturing on the Institution of Human Rights Defenders
NALSAR, Hyderabad and ILS Pune
6.3 Dialoging with the imperialist: Panel Discussion in the Indian Psychiatrists Society
6.4 Dialoging with the imperialist: The User-Survivor Viewpoint

7 Civil Society Sensitization


7.1 Child Rights and Children with Disability
7.2 Reaching out to Womens Groups: the Lecture at Anveshi
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7.3 Public Lecture: Force is Not Mental Health

8 Public Policy Advocacy


8.1 National Trust Consultations
8.2 The Bill of Rights
8.3 The Efforts That Did Not Work Out

9 The Right to Reasonable Accommodation and Support


9.1 The Economy of Passion and Commitment
9.2 Receiving support
9.3 The Experiential Understanding of Providing Support

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Is Advocacy only Self Advocacy?

10.1 Who Should Advocate for Disability Rights?


10.2 The Non-Disabled Disability Advocate

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Conclusions

11.1 Spaces for Self Advocacy


11.2

Strategies to Offset the Disadvantages of the Multi-Sectoral Approach to Self

Advocacy
11.2.1 Dilemmas of Self Advocacy
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11.2.2 Pitfalls to Self Advocacy

11.2.3 Resources for Self Advocacy

PREFACE

Nothing about us without us was the slogan, which continually resonated in the United
Nations during the negotiations on the Convention on the Rights of Persons with
Disabilities (hereinafter CRPD). The CRPD was negotiated with the active participation
of civil society led by Disabled Peoples Organizations. It was continually asserted and
increasingly believed that persons with disabilities were the best spokespersons for their
own rights.

The expertise of experience, it was believed, trumped all other expert

knowledge; the above said slogan was a pithy capture of this sentiment.

The personal participation of persons with disabilities in the CRPD negotiations required
modification of communication procedures as also alteration of attitudes. If deaf persons
required sign language, and blind persons Braille, persons with intellectual disabilities
needed plain language and persons with psychosocial disabilities an unprejudiced
hearing. It was possible to have these demands fulfilled in the United Nations because the
process of negotiating the CRPD was a time bound one; and stalwarts of the disability
rights movement were at the forefront of negotiations. Persons with disabilities need to
speak in their own voice at all forums and at all times. The social participation of persons
with disabilities requires that such participation be accepted as a non-negotiable norm and
the barriers to participation of persons with disabilities be removed.

While some of the barriers to social participation faced by persons with disabilities are
common across disabilities; there are other barriers which are unique to a particular
disability. Consequently, self advocacy plans require that both the common and the
unique obstacles are surmounted. An effort to catalyze self advocacy for persons with
psychosocial disabilities in India was initiated by Bapu Trust, Pune. To help in that
process, an invitation was extended to Gabor Gombos an internationally renowned self
advocate to visit India for a period of six months. This report recounts the planning,
execution and learning from this project.

The report has been jointly written by Gabor Gombos and Amita Dhanda. This report
writing exercise was started with the purpose of deliberating on self advocacy in the light
of our self advocacy initiatives and the travails we encountered in the cause. It was also
presumed that since the report was on self advocacy it should revolve around the persona
of Gabor Gombos. Somewhere in the middle of this exercise, we realized that since the
report was being written by two persons it needed to provide space for both of them. So
if Gabor was a self advocate on issues of psychosocial Amita had been advocating for the
cause of persons living with psychosocial disability. If Gabor had views on receiving
support, Amita had an opinion on providing support. And both had responses on each
others perspective.

As joint authors of this report, our views both converged and

diverged on several questions, this inter se dynamic altered the format of the report from
monologue to dialogue. Thus, whilst there are several points in the report where the
authors speak in one voice, there are an equal number of places where their opinions
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differ. This multiple voice format created stylistic and communication challenges. The
authors neither wished to muffle the multiplicity of their voices nor did they want to
inflict incoherence on the reader; consequently, it was decided that first person plural
shall be used for those segments of the report which they have written together or where
they wish to stress upon the convergence of their views. And first person singular with
the name of the particular author in bracket for those portions of the report which was
exclusively written by any one of them or when they wish to present their distinct views.
This procedure has been adopted to provide space for difference and diversity and not to
assert authorial possessiveness.

A monograph on self-advocacy is necessarily sensitive on identity and terminology.


Consequently, a short explanation on some of the common terms used in the document
has been provided.

Advocacy: Any effort to alter existing attitudes, practices, or behaviour through


discourse, policy or law.

Self-advocacy: Advocacy done by persons directly affected by the issue. In the


case of disability self-advocacy means advocacy undertaken by the person with
disability.

Users/survivors of Psychiatry: describes people who were or have been at the


receiving end of services, or who experienced major mental distress. Users find
the discipline of psychiatry helpful in addressing their problems, whilst survivors
obtained negative impressions of psychiatric services and hence consider
themselves as survivors of the inhumane treatment and human rights violations in
the system and by the system. Both users and survivors advocate for more person
tailored and humane practices.

Persons with psycho-social disability: emphasizes that exclusion and


discrimination which disable is a result of the inappropriate social response to the
needs of people with different psychological experiences. It may be pertinent to
inform that whilst Persons living with mental illness is a term framed in the
medical model, persons with psychosocial disability describes the same group in
the social model of disability.

Persons living with mental illness: Mental illness is the most commonly
understood description of psychosocial disability in the non disabled community.
Further a number of persons who have been diagnosed with a mental illness accept
the medical explanation, and find it useful, even as the illness explanation has been
subjected to rigorous interrogation by both psychiatrists and patients. However,
since personhood and life prevail over diagnosis, we have, to facilitate

communication with unconverted audiences, used the term persons living with
mental illness in contradistinction to mentally ill person.

1 Introduction: The Silenced Other Voice

You cannot plan for empowerment without understanding oppression. Iris Marion
Young1 is of the opinion that disproportionate attention has been devoted to inequitous
distribution of resources to understand the problem of exclusion and disempowerment,
even when group affiliations play an equally signal role. In order to demonstrate the role
that identity politics plays in the exclusion of certain groups she constructs what she
terms the five faces of oppression. Cultural Imperialism, one of the faces of oppression
1

Iris Marion Young, Justice and the Politics of Difference, Princeton University Press, Princeton(1990)

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which Iris Young includes in her study is of special relevance to this report. To
experience cultural imperialism Young says, is to experience how the dominant
meanings of a society render the particular perspectives of ones own group invisible, at
the same time as they stereotype ones group and mark it out as the other2.

This imperialism is strengthened by the fact that the dominant group often has exclusive
or primary access to both means of interpretation and communication in a society 3.
Consequently, the dominant cultural products of the society that is those most widely
disseminated, express the experience, values, goals, and achievements of these groups.
Often without noticing they do so, the dominant groups project their own experience as
representative of humanity as such4.

Persons with disabilities are amongst the defined others who experience this exclusion. In
order to overthrow the subjugation of the imperializing group, the excluded community
needs to obtain voice for its own perspective and experience. The assertion of this
perspective however requires persons with disabilities to assert their disabled identity. A
process which triggers the double consciousness referred to by Du Bois whereby while
the excluded persons seek recognition for their humanness, their hopes, aspirations and
capabilities; the dominant community only seeks to reinforce their difference, deviance

Young at pp 58-59
Nancy Fraser Justice Interruptus: Critical Reflections on the Postsocialist Condition Routledge and Kegan Paul,
New York, London (1997)
4
Young at pp 59
3

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and inferiority. This process of reinforcement is further strengthened by the


inaccessibility of the physical and the normative environment.

Social exclusion is a determining lived experience of all persons with disabilites,


irrespective of the nature and type of the disabilities, or the culture and traditions of the
country. Consequently the goal of being part of the society on an equal basis with others
is a shared and unifying aspiration of people with disabilities.

1.1 Particularities of Psychosocial Disability

This process of asserting their own voice is difficult for all persons living with disabilities
but is especially difficult for persons living with intellectual and psychosocial disabilities.
This is because the dominant perspective on persons with intellectual and psychosocial
disability presumes them to be both incompetent and dangerous. This presumption
constantly exposes persons living with intellectual and psychosocial disabilities to the
threat of preventive detention and involuntary treatment which aims to alter their
thoughts, feelings and volition.

To challenge this perspective, it is important that persons with intellectual and


psychosocial disability show the falsehood of the belief. However such a demonstration
is severely impeded by the social stigma that accompanies intellectual and psychosocial
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disability, this stigma is reinforced by legal disqualifications that dehumanize and


encourage selective listening to the self-advocate. When he or she says what the
dominant perspective wants to hear, he or she is heard; otherwise the self-advocates
views are ignored as incompetent. Persons living with psychosocial disabilities are thus
faced with a lose-lose situation where if they dont speak they allow the social stereotype
on persons with disabilities to continue unchallenged and if they do speak, they expose
themselves to legal proceedings. Since a number of persons with psychosocial disabilities
retain their civil status by maintaining silence on their disabled identity, they are naturally
averse to the public assertion of their disabled identity, when such assertion could
activate the disqualifications and result in the loss of civil status 5. This fear of legal
proceedings gets many persons with disabilities to live their lives in denial of their
disability. Insofar as their disability is an integral part of their identity, such denial causes
persons with disabilities to lead a false and incomplete life 6.

Persons with disabilities face exclusion from participation in both public and private life.
For most disabled groups this exclusion happens indirectly, through the lack of
accessibility and the denial of reasonable accommodation. For persons with psychosocial
disabilities law joins in the powerful arsenal of forces of exclusion. Perceived incapacity
5

One of the attributes of personhood is the recognition of the human person as a person before the law. This
recognition allows the individual person to organize his or her life according to his or her preference and judgement
provided this choice or behaviour does not harm any other. This presumption has not been universally extended to
all human beings. Different human groups have been denied recognition before the law and the capacity to organize
their own affairs at different points of human history. These disqualifications had to be weeded out of the law after
recognition was accorded to the particular excluded group. This loss of civil status and these disqualifications still
continue for persons with intellectual and psychosocial disabilities.
6
It is important to note that this life is coercively rendered incomplete both in private and public areas of human
existence.

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finds answer in legal incapacitation. People may loose the opportunity to exercise their
legal rights to make choices in all private and public areas, including where and with
whom to live, the right to marry, the right to be employed, the right to vote, the right to
make free and informed treatment decisions. The prejudice that people with psychosocial
disabilities are dangerous for themselves or others, can always lean on mental health laws
providing for civil commitment to psychiatric facilities and forced treatment.

People with psychosocial disabilities thus have good reason to be cautious before
publicly speaking up as self advocates. Besides the social stigma of disability, legal
incapacitation, incarceration to locked units and forced treatment with mind altering
treatment methods are all realistic threats for persons with psychosocial disabilities.

Even if the legal regime of disqualification is disregarded the forces of cultural


imperialism operating in the field of mental health create a situation where the general
public is much more likely to believe in the opinion of the psychiatrists and dismiss the
user-survivors view as delusional and unlinked to reality.

1.2 Selective Listening to the User/Survivor Voice

There is no other disability which is so overwhelmingly dominated by one particular


profession than the field of mental health which is controlled by psychiatry. There is a

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long history of paternalism in the field of biomedicine and in the case of psychiatry this is
further strengthened by legal measures of deprivation of liberty and involuntary
treatment, all in the best interest of the patient.

On the level of the individual user/survivor, concerns on mental incompetence are usually
raised when the person does not comply with the treatment. The presence of competence
is typically not questioned when the person complies with the treatment, even if the
pursued therapy causes irreversible side effects.

This selective and biased judgement of competence also manifests itself in dialogues
between the mental health profession and the user/survivor community. These dialogues
proceed by selectively listening to the user/survivor voice.

This selective listening can be illustrated with a few examples from Gabors work in
Hungary. Years ago the Hungarian government in execution of its plan to rationalize
health insurance wished to reduce state subsidy to psychotropic drugs. The Hungarian
Mental Health Interest Forum (HMIF) received a large number of complaints from users
and urged the Forum to intervene. HMIF issued a statement raising social justice
concerns, emphasising that users choice needs to be respected and promoted. The
planned measures endangered access to more expensive medication by the poorer users,
further limiting their choices over their treatment. The psychiatric communities as well as

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the pharmaceutical industry applauded this statement as it also served their interests,
though the HMIF statement sprang from a different reasoning.

A counterexample on how the dominant power reacted arose when HMIF raised concerns
and ran a campaign against unethical clinical drug trials with psychiatric patients without
free and informed consent. The Washington Post and BBC Channel Four conducted
researches and published their findings as part of the HMIF campaign. The response by
leading psychiatrists, holding leading positions in the mental health community was like
this: The media should not have listened to the users as they are paranoid and do not
know what they are talking. This response was made despite the fact that the user voice
obtained space in high prestige and reputable mainstream international media, an
occurrence which is more the

exception than the rule. Possibly, the psychiatric

establishment was constrained to issue the public statement because other than making
such public statements, the psychiatric establishment had no other mechanism

to

invalidate the voice of user/survivors. Where they possessed other power they used it.
Thus the psychiatric community initiated disciplinary measures against their colleague, a
psychiatrist who had collaborated with HMIF.

The HMIF experience is not unique. The Centre for Advocacy in Mental Health Pune
( CAMH) had also to continually ask how to break out of this imposed isolation? How to
provide safe space for persons with intellectual and psychosocial disability to assert their
identity without fear or shame? How to encourage people with disabilities to assume
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leadership roles and yet provide sufficient support to bear the burdens of leadership?
How to make self advocacy happen for persons with psychosocial disabilities in India?

The Centre for Advocacy of Mental Health (hereinafter CAMH) has undertaken several
initiatives to this end. Those initiatives are not the subject of this monograph, which is
deliberating on the strategy of importing expertise to catalyze self advocacy. We have
already outlined the constraints that persons with psychosocial disabilities face to
undertake self advocacy. The question is can some of these constraints be reduced if such
advocacy is undertaken in a country other than one to which the self advocate belongs?
Can the sphere of influence be expanded if the self advocate is not only presented as a
user/survivor but other facets of his persona are also foregrounded?

Gabor Gombos visit to India can be seen as a program which provides a piloting
opportunity to study how external expertise can be used to trigger internal learnings: How
globalization provides a unique opportunity to build a peoples movement. The various
activities carried out under the program may only be of interest to us; but the objectives
with which the activities were carried out as also the learnings from the entire program
should be of interest to the disability rights movement, human rights advocates and larger
civil society. Consequently this narration primarily reflects on why self advocacy is
required? How should such an enterprise be organized and what should be the content of
the program? In making this reflexive narration we outline the strengths and weaknesses,

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opportunities and threats of this self advocacy enterprise both to assist self learning and to
share our experience with the adherents and the opponents of self advocacy.

How to Design a Six Month Self Advocacy Promotion Program?

The designing of the six month program threw up several critical questions. We detail
those questions and our answers in this part of the report.

Who should be the constituency of the programme?


- the user survivor community
- the user-survivor and the disability community
- the wider civil society
- academic institutions

Whilst we recognized that leadership for self advocacy has to emerge from the user
survivor community and hence this community had special interest in the programme.
We also felt that confining our attention only to this community may be self limiting, and
to train self advocates without preparing the arena where the self advocates will operate
could cause future frustration. Consequently, the most ambitious plan was chosen. It was
decided that Gabor shall engage with the user-survivor community, the wider disability
community, academic institutions and civil society. This approach was also dictated by

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the multi- faceted personality of Gabor Gombos who is a user- survivor, a human rights
defender and a former theoretical physicist. These very many facets of his personality
meant that he had the credentials to have different doors open for him. And even when
the door opened for the former theoretical physicist or the human rights defender, the
user survivor also obtained entry. The adoption of this plan was also encouraged by the
credentials of the two facilitators of the program: V Bhargavi a philosopher by training,
the Executive Director of CAMH and the managing trustee of Bapu Trust, Pune, who had
in a decade of grass root work created close contacts with user/survivors, caregivers, the
wider disability community and the human rights organizations and Amita Dhanda a
Professor of Law at a leading law school who had been researching and writing in the
field of disability rights hence straddled the world of academics and activism.

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Schedule of the Six Month Visit to India [ in box]

June 27-28: National Care Givers Workshop Training with Bhargavi V Davar, Pune
June 30:
July 7:
July 12:

Self-Advocacy Workshop, Parivaar, Hyderabad


Open House at Bapu Trust: Force in Mental Health, Pune
User and Peer Support Meet: Launch of Hamsayeh Peer Support Group,

Pune
July 25-26:

Lecture with Amita Dhanda Child Rights and Social Duties: A Multi
Sectoral International Consultation at NALSAR, Hyderabad

July 30:

Lecture on the Kuhnian theory of paradigm shifts and its application to


jurisprudence, NALSAR, Hyderabad

July 31:

Changing Paradigms and Competing Influences in Physics and


Psychiatry at the Department of Philosophy, Central University,
Hyderabad

Aug 2:

National Trust Southern Consultation, Bangalore

August 4:

Speaking Truth to Power: The Institution of Human Rights


Defenders at NALSAR University of Law, Hyderabad

August 5:

Changing Paradigms in Science and Law at NALSAR University of


Law, Hyderabad

August 9:

Lecture on Alternatives to Mental Health Care at the womens


organization ANVESHI, Hyderabad

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August 14:

Speaking truth to power, Lecture at ILS Pune, Pune

August 16:

Panel on Law, Mental health & Marriage at the Indian Psychiatric


Society, National Mid Term CME 2008

August 23:

North-Eastern National Trust Consultation, Guwahati

September 11: The Promise of CRPD, Lecture with Amita Dhanda at the National
Trust
Knowledge Workshop, Delhi
September 12: Changing Paradigms and Competing Influences in Physics and
Psychiatry,
Lecture at JNU, Delhi
September 18: Lecture with Bhargavi V Davar at the Celebrating Changemakers:
Meeting with
Newly Elected Ashoka Fellows meeting, Pune
September 26-28: CRPD and the Bapu Work Ethics, Lecture with Amita Dhanda
at the Bapu retreat
October 10-11: National consultation on citizens' charter of human rights in mental
health:
10-11 October, NAAJMI, New Delhi
October 17-19: National User Workshop Training with Bhargavi V Davar, Pune
November 4-5: Workshop with Emerging Disability Leaders (Zonal Technical Resource
Team)
NIMH, Hyderabad
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November 22: Public Lecture: Force is Not Mental Health, Pune.


November 24: Chennai Vidya Sagar cross-disability training with Amita Dhanda for
young
self-advocates, Chennai

Multifaceted Personality [In Box]

User/survivor:
In 1995, together with 10 peers Gabor founded the very first, user/survivor only,
association in Hungary (Voice of Soul). This organisation which was started
with peer support also ran a number of cultural, educational and employment
initiatives. The need for self-advocacy emerged as Hungary started to intensively
legislate on health and social care. Since then capacity building for self-advocates
has been an ongoing activity. In order to influence legislation and national policy
making there was need to collaborate with non-users/survivors under the
leadership of the user/survivor community. To that end, the organization initiated
a broader coalition to promote the human rights of persons living with mental
illness. Later this was formalized as a user/survivor controlled federation, the
Hungarian Mental Health Interest Forum, of which Gabor was the founding chair.
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The organization learned a lot from experiences of other users/survivors and their
groups, mostly from Europe and North America. Gabor worked as consultant for
a number of international NGOs (Hamlet Trust, Mental Disability Rights
International, Geneva Initiative on Psychiatry) to catalyze the emerging
user/survivor movement in East Europe. During Gabors chairpersonship and
board membership the European Network of (ex-)Users and Survivors of
Psychiatry, East Europe, became one of the most active regions in the European
user/survivor movement.

Human Rights Defender: [ In Box]


Gabor camapaigned against the use of cage beds in psychiatric facilities in
Hungary and other East European countries. The campaign itself was multifaceted:
it ranged from round tables, through exhibitions, dialogues with authorities to
collaborating with regional organisations such as the European Committee for the
Prevention of Torture. Again Gabor and his peers worked in coalitions with
human rights NGOs, human rights institutions and other NGOs working for
reforms in the mental health sector. After almost 10 years of campaigning the
government of Hungary invited Gabor to participate in a small drafting group to
draft the prohibition of the use of cage beds which entered into force in 2004.
Civil commitment as a violation of the right to liberty was another concern for
Gabor as a human rights defender. After exhausting all the domestic remedies, the
Mental Health Interest Forum and the Mental Disability Advocacy Center jointly
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submitted a case to the European Human Rights Court. In 2006 the Court issued
its judgement which obligates Hungary (and all the State Parties to the European
Convention on Human Rights) to review their mental health laws to ensure that
persons are not detained in psychiatric facilities based on their diagnosis. This,
together with the UN Convention on the Rights of Persons with Disabilities
provides a solid ground for advocates to further challenge disability based
incarceration.
Since 1993 Gabor has been working to establish that the institution of
guardianship was a disabling one. To this end Gabor first, contributed to a long
and broad discourse on the issue, which documented how appointment of
guardians and deprivation of legal capacity does not protect persons with
disabilities; Rather it exposes them to abuse and neglect. Gabor next participated
in a legislative reform exercise between 1998 and 2001, which amended the
guardianship law by introducing partial guardianship. The adoption and entry into
force of CRPD gave further momentum to this work and in 2007 Gabor initiated
the formation of a large civil coalition to draft a new law that recognises legal
capacity of all persons with disabilities, prohibits full guardianship and enables
alternatives to guardianship.
Gabor has always been committed to work together with those who live in long
term institutions. To that end, he has designed and conducted training for
residents councils of institutions, conducted human rights monitoring of such
institutions, and advocated for a moratorium on new admissions.
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Theoretical Physicist [In Box]


To raise awareness about the creativity and human potential of people living with
mental illness, Gabor has been researching the biographies of a large number of
leading theoretical physicists and mathematicians who have experienced major
mental breakdowns or have been diagnosed with mental illness. This work is an
effort to demonstrate that in many cases, the achievments of these mathematicians
and physicists were reached not in spite of their disability; Rather their different
perceptions and cognitive frameworks enabled them to come up with their
discoveries.
Using a philosophy-of-science argument based on the history of revolutions in
physics, Gabor

has been challenging the currently dominating biomedical

paradigm of psychiatry.

2.1 Strengths and Weaknesses of the Multi-dimension Plan

The strength of the multi-sectoral design choice was that the activities of Gabor Gombos
happened on a wide canvas. Very many organizations and sectors which may not
otherwise have interacted with a person with disability were exposed to his views. More
importantly the claim that disability does not oust capacity was demonstrated and not just
contended. Gabor thus became a live example of simultaneous presence of disability and

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capacity. The efficacy of this strategy was demonstrated by the response of several
persons in the mainstream who wished to take up the issues surrounding the rights of
persons with disabilities after listening to Gabor. For example, Shanta Sinha,
Chairperson, Child Rights Commission wanted the Commission to take up the issue of
children with disabilities after listening to a presentation on children with disabilities by
Gabor7 and Mr.Atul Prasad, Joint Secretary, National Trust wanted to organize an
orientation program for senior civil servants on legal capacity and support networks after
listening to Gabor Gombos and Amita Dhanda on the topic8.

The weakness of this choice was that it spread the benefits of the programme so wide that
it was difficult to quantify the gain. Also because so many activities were happening
across otherwise unlinked sectors, it was often hard to undertake follow up and pursue
the advantage initially obtained.

A multi-faceted self advocate generates opportunity to simultaneously address the


concerns of user/survivors to multiple constituencies. The efficacy of this strategy is best
demonstrated when the user/survivor does not obtain entry in the public arena as
user/survivor, rather other facets of the personality are highlighted.

The employment of the multi sectoral strategy allows persons with disability to engage
with several communities who have stereotypical understanding of disability issues and
7
8

DO No 13/NCPR/2008-08/Disabilities 200
In personal conversation.

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little knowledge of rights of persons with disabilities. However such engagements can be
emotionally traumatizing for persons with disabilities and special strategies to offset this
threat are required.

3. Preparing the Ground for Self Advocacy

As already mentioned in the previous segment, by reason of the capabilities of the self
advocate and the facilitators, it was decided to undertake this pilot on self advocacy by
engaging with several communities ranging from the user/survivor to the wider civil
society. If these various communities are circularly imagined, then the user/survivor
stands placed at the centre and the wider civil society at the periphery, with the other
communities situated at different points between the centre and the periphery. In this
program, the connection from the innermost to the outermost circle was forged by the
same person. However in a different design, the connections could be forged by a team,
instead of a single individual.

The various activities Gabor undertook across spaces brought to the fore the kind of tasks
which would need to be performed across sectors and constituencies to prepare the
ground for self advocacy.

The various activities undertaken in the program fulfilled the following functions:
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Provision of peer support


Capacity building of self advocates
Knowledge building and awareness raising
Dialoguing / Discoursing with the cultural imperialist
Civil society sensitization
Public policy advocacy

In this segment, the various activities undertaken by Gabor Gombos under each of the
above heads shall be outlined. Also the gains and losses in the doing of these activities
and the learnings for the future shall be stated. Even as this segment is informed with the
deliberative objectives which have prompted the writing of this report, it inevitably
contains greater factual details of Gabors India program than other sections of the report.
Consequently these informative functions do at times overtake the analytical accent
prevalent in other parts of the report.

3.1 Provision of Peer Support: Activities with users/survivors

3.1.1 Users/survivors at Bapu Trust : Since the very beginning individuals who had been
users/survivors of psychiatry played a formative role in Bapu Trust. And yet, Bapu Trust

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had not been a user/survivor controlled organisation as those individuals had been doing
their work with their other identities: being experts in social sciences, social justice
activists etc. It had been a deliberate choice at the inception to establish a non-medical
professional organisation with a social justice focus to catalyze discourse, conduct
evidence based advocacy in the field of mental health. The strength of Bapu Trust were
intimately interlinked with this identity.

With time an increasing number of users/survivors joined in as staff or as users of the


Trusts services (such as the library, the non-medical counselling service SEHER, the
oral archives) or just to enjoy the safe place of the organisation. Parallel with that and
also in conjunction with Bapus international activities, such as the participation in the
negotiations of the then drafted Convention on the Rights of Persons with Disabilities, the
need to become conscious about the user/survivor impact on Bapu Trust had been
irresistibly raised. Bapu Trust joined the World Network of Users and Survivors of
Psychiatry, leading figures at Bapu started to publicly identify themselves as survivors
and the issue of user/survivor control became part of the internal organisational
discourse.

The need to consciously work to promote user/survivor control resulted in a number of


emerging initiatives at the time I (Gabor) joined Bapu Trust as visiting Ashoka Fellow.
The mere idea of having an international user/survivor self-advocate also stemmed from
that need. A user fellowship programme was designed to include individuals with a self29

imposed user/survivor identity into the work of the organisation. The need to provide a
safe and still open space to allow peers to support each other was also seen as timely.

My presence at Bapu speeded up some of those processes. Even without any special
purposiveness I (Gabor) interacted with users/survivors in and around Bapu. Many times,
especially in the beginning, I was unaware if the person I was informally chatting,
sharing my experiences in the user/survivor movement, talking about force in the mental
health care sector was a user/survivor or not. This interaction between me, who was seen
as a world renowned self-advocate and the user/survivor members of the Bapu
community, happened in the complex organizational environment which drew its strength
from the social justice movement and the social science disciplines. . This complexity of
interactions between peers, between peers and professionals, some of whom were
primarily seen as professionals while others as self-advocates, resulted both in fruitful
cross-fertilization and in risk creation, a phenomenon of which neither I nor my
colleagues at Bapu were aware.

3.1.2 Hamsayeh: There had been innumerable discussion at Bapu before my arrival on
the need to catalyze peer support either in Bapu or outside. I joined in that discourse and
felt that much more discussion could disempower people and delay the start. Hamsayeh
as a safe place for peer support was launched, most of those who attended the
inauguration and later the sessions, had already had contacts with Bapu, either being staff
there or using some of the Bapu services, or at least participating in some of Bapus
30

workshops. I had the privilege of participating in the launch and attending the sessions
whenever my busy travel schedule allowed for it.

From the very beginning, I was conscious of the moral power which emanated from my
international activism and long history in the field. A power that could easily put me in
the center of the group, preventing the healthy growth of relationships based on equal
power, needed in any peer support. Expressing this risk in the group, I cast myself in a
relatively passive role, a persona which, many a time was difficult to maintain. There
were discussions on what

was

meant by the statement that Hamsayeh was an

independent initiative and not a Bapu program? Could Bapu provide the space for the
Hamsayeh meetings without compromising the independence of the initiative ? Could
the Director of Bapu be part of the group? With time, the sharpness of these questions
smoothened out and as people learned more from one another, more time was spent on
actually supporting one another.

Hamsayeh has been the most self-reflective peer support group I have ever met. A regular
diary of the spiritual and interactional evolution of the group was published as a
grassroots initiative. Much time was spent at every session on reflecting where we are.
This consciousness was one of the strengths of the intitative and I am convinced that a
Bapu influence is, at least partly responsible for it.

31

After three months of existence, near the end of my stay in India, in a complex interaction
with a number of other coinciding happenings, the issue of power became central. Also
the question what is the difference between a service providing support for a group of
users/survivors and a peer support group was repeatedly raised. No consensus was
reached. Some people felt that Hamsayeh was seen by others as a service of the Bapu
Trust and wanted to go back to genuine peer support; Others felt that their user/survivor
identity was not acknowledged and respected just because of their organisational
affiliations. No free and open minded discourse took place on the important issue of
supportive service vs. peer support.

The group lost control over the dynamics. Any external intervention on behalf by anyone
more closely affiliated to Bapu would have been seen as an attempt

at imposing

professional control by Bapu. The Hamsayeh initiative and especially the dilemmas
thrown up by the program shows that it is necessary to address questions of power and
hierarchy whilst designing any peer support initiative. Any hesitation to look at the power
question in the eye could introduce complications which may endanger the peer support
initiative itself.

3.1.3 Self-Advocacy: The Art of Negotiating- The Politics of


Dignity"

32

Despite the teething troubles the long term benefit of peer support to user-survivors was
demonstrated by the fact that I (Gabor) together with colleagues from the Hamsayeh Peer
Support Group was involved in the creation of a material that can be used to train selfadvocates working in the field of mental health. The material was prepared in a series of
conversations on self-advocacy, mental health, dignity and fundamental rights. These
conversations were conducted to draw upon my experiences and required me to go back
to the basics and foreground the intimate links between self-advocacy and peer support.
The creation of the materials enabled me and my Hamsayeh colleagues to highlight that
the objective of self-advocacy is to exercise the right to freely express our views, to
promote self-determination and protect dignity in the field of mental health, where both
in the institutional system of psychiatry and in the informal systems of family and
community all these rights are at permanent risk of being ignored. Self-advocacy is rather
a process than an act, and negotiations play a central role in the process.

4 Capacity Building of Self Advocates and Cross Disability


Advocacy

4.1 Building Leadership among People Living with Mental


Illness: The National User Workshop

33

4.1.1 Conceptual preparation

Although the idea of having a training workshop for users of mental health services,
including those who are diagnosed with severe mental illnesses, had been among the
very first ones in the planning stage of the six months programme, its implementation
happened near the end of my stay in India. With , Bhargavi V. Davar, who was the codesigner and co-trainer of the workshop, we decided to postpone the training several
times. Among the many reasons for postsponing, for me the most important one was to
gain time to become better informed of the Indian reality, which served as the everyday
context for my Indian peers. While we (Gabor and Bhargavi), could easily agree on the
objectives of the workshop even prior to my arrival in India, an increasing number of
questions arose regarding the How by which to reach those objectives? For example
the role of families, which is significantly different in India than in my home country, had
to be better understood by me before we decided whether family members should be
eligible to participate. (The National Care Givers Workshop, which was held soon after
my arrival in India also created further needs for care givers to attend training events.) It
took much time, much talking and sharing with peers, the learnings from the National
Care Givers Workshop, many interactions with Indians, months of living in and being
part of a housing society in Pune, for me to obtain a better insight to decide on the
questions:

34

For whom exactly to run the workshop? There were several options: users only;
users and family care givers; users, family care givers and professionals.

How to make the workshop, the very first one of that kind in the country, where
participants have to overcome the barriers of stigma and self-stigma to identify
themselves as self-advocates?

The objectives of the training were:


To enable the process of empowerment of users of mental health systems
To develop ideas on building self worth and building on ones own potential
To provide skills on negotiating with various agents in ones lives and establishing
boundaries
To provide learnings about self advocacy

The introduction to this booklet provides a theoretical explanation on why these issues
need to be addressed from the very beginning, to tackle the consequences of Du Bois
double consciousness. While the phenomenon of exclusion is universal, its faces may
vary from culture to culture, place to place. Consequently the best possible ways to help
peers overcome barriers and take the first and most difficult steps to become selfadvocates may be culture specific. It was therefore important to consider: what language
would be acceptable to describe ourselves in the group? How to communicate very

35

sensitive, often traumatic issues among ourselves without creating additional barriers to
participation in the group work?

After long deliberations Bhargavi and I decided to go for a three day interactive
workshop with at most 25 participants. Interactivity called for limited number of
participants, while the need for a safe environment, where people can empower
themselves within a short time to share painful experiences, called for a user only space.
Also Du Bois double consciousness and the phenomenon of selective listening can be
best dealt with in user only groups.

But when the practical organisation of the training started, we faced seemingly
unresolvable problems. How to reach the users we were to invite? There are family
groups and organizations in India, but the genuine user movement is just about to start.
Since not many people have identified themselves as users, how do we seek them out.
The only way we could find, besides advertising the event publicly through the media,
was contacting family members and service providing NGOs with whom Bapu Trust had
already had contacts, directly, requesting them to give the information on the training and
to ask their user family members/clients if they were interested in participating.

Family members and professionals expressed their own interest in participating in the
event. They also raised concerns that their user relative/client would require assistance,
without which they could not attend or actively participate in the proceedings.
36

At that point we decided that the first day would be an open house for anyone willing to
come, but the second and third days are open only to users. If the user requests for
personal assistance, that will be arranged jointly. (Except for one user, who did not want
to come after the first day, no one asked for such arrangements. The user only group
managed to support one another sufficiently.)

One day before the workshop, the, the Times of India (Pune) published an interview with
Bhargavi and myself. The interview briefly but correctly described why users needed
self-advocacy and what was the workshop aiming to achieve. Consequent to the
newspaper interview, many people expressed their interest and signed up for the first day
of the event. This surge of interest meant that the number of expected participants
climbed from 25 to 50 persons. Since the working methods were developed for 25
persons the climb in numbers required us to revisit the working methodology.

4.1.2 The first day

The first day will be narrated in detail for several reasons but most majorly because this
day serves as the backdrop for the entire workshop.

The major aims for the first day were manifold. We (Bhargavi and Gabor) wanted all the
participants: users, family care givers and professionals to gain a basic but clear
37

understanding on why self-advocacy is needed. Why speaking on behalf of a relative or


client is different from the user speaking up for him or herself. Why advocating on behalf
of another person can never replace self-advocacy. We also wanted to alleviate the
anxieties of some of the non-user participants. We wanted them to understand that their
user relatives / clients will be in a safe place where the spirit and practice of mutual
support is very much present. Finally, we wanted to facilitate the non-users to open their
eyes and hearts to see the strengths of the users and their own vulnerabilities. We wanted
to engage with the care givers, as we did not see them as enemies. We wanted all users
and care givers to understand the basics of self-advocacy and wanted to remove the
barriers in the group to enable the user participants to experientially learn more about
how self-advocacy can work. How we addressed this complexity of targets, which in the
West are often seen as conflicting if not antagonistic I need to detail the philosophy,
technology and chronology of the first day.

The day started with a round of introductions. The diversity of the group was astonishing.
Some people introduced themselves as users who are aware of their rights, others as
patients living with a certain diagnosis. Some of the family members acknowledged their
own distress; others were unclear of the identity with which they had entered the training.
Most of the non-users, and some of the users introduced themselves using a biomedical
language (My daughter, who is very severely disabled schizophrenic, is unable to
attend; I am a recovering schizophrenic). These descriptions clearly illustrated the
cultural imperialism of biomedical mental health.
38

Before the substantive sessions the group adopted a small number of ground rules,
recommended by the facilitators. The most important ones were:

Respect for the diversity of views


All the expressed views and shared experiences are seen as valid
We are here to learn and share with open minds and not to make declarations of
our belief on what truth is.
Confidentiality: Everything that happens in the group remains in the group.

The first session was a small group work, a liberally adapted version of a training called
New Lifestyles. This discourse based training was originally developed in the UK, then
adapted for Central-Eastern European context by a group of self-advocates and nondisabled advocates in an international workshop hosted by my (Gabors) self-advocacy
organisation in Hungary.

This adapted version of New Lifestyles training consisted of three stages. People were
divided into small groups. We had three user groups and one group for the non-users.
Each group was working on the same task. The same 25 cards were distributed in each
group among the group members. Each card described an everyday situation, such as

39

Being able to get a paid job and also support to maintain it


Being listened to and encouraged to express your own views
Being in a meeting with your doctor to decide on your health care. While your
doctor explains your health condition he is permanently looking into the eyes of
your relatives and completely ignores your presence
Being asked your opinion on a service you receive and your views being taken
into consideration when improving the service
Not being trusted

In the first stage people in each group had a short deliberation on the situations written on
the cards. They needed to decide along with brief reasons if the situation was something

they would like to happen in their lives


they would like to avoid in their lives
they were neutral about it.

The final decision on which category the given situation belonged to was to be made by
the person who held the card, but if there was significant disagreement in the group, this
was noted and reported in the feedback later for the large group of all participants. Each
small group went through all the cards. As an outcome of this stage each group had three
columns in front of them. In one column there were those situations which were

40

classified as I would like to happen, another column consisted of the cards with scripts
that were judged as I would like to avoid, with a third column for situations designated
as neutral. Also, each group was required to maintain a record on what situations there
was broad agreement and on which ones there was significant division of views.

In the second stage, the same small groups went through those situations which were in
the I would like to happen column and answered the question: Is such a situation
typically available for users of mental health services? If the groups consensus was
No then the card remained in the column, otherwise it was removed.

Then came the I would like to avoid column. Now the group was asked to answer the
same question as before, but this time those cards remained in the column to which the
consensual group answer was Yes.

The cards in the third column were totally removed.

In the third stage each group worked on the remaining cards. With those situations that
were seen as desirable but not typically available for users and those, which were seen as
aversive, but typically present in users everyday lives. Each group spent some time with
deliberating on Why this discrepancy is there? What could I as an individual do to
change it for the better?

41

The final part of the session was a feedback from each small group to the plenary on their
most important learnings through the training exercise. Some of the most memorable
outcomes were:

The identity of being a user is a complex one. Many people found existing
language inadequate to describe their experiences and their views on their identity.
Often the user identity is imposed on the person externally, by the mental health
system, by care givers, etc.

There is no such a thing as the user view. Users are a diverse group; each
individual has his/her own value system that needs to be respected

Having said that, still there was a systematic difference between the user groups
views and the non-user group on some issues. Especially what protection,
caring, support meant was understood differently by the majority of users and
the non-users.

When the Being able to get a paid job and support to maintain it situation, was
being discussed some members of the non-user group got confused. They asked
the facilitator for clarification: from whose perspective should they evaluate the
situation? From the care givers perspective, or from the users perspective. The
42

plenary spent some time on this dilemma and sought elaboration of the same in the
feedback

session.

This

deliberation

resulted

in

the

recognition

and

acknowledgement of something, which I have seldom experienced before during


similar trainings in the West. Namely: The care giver group publicly
acknowledged that their perspective is different from the users views. This
acknowledgement was critical to the development of the understanding why
advocating for a user relative/client is different from advocating for oneself. Also,
this understanding could serve as a ground for future collaboration between the
user and non-user groups to promote the self-advocates perspective.

In deliberating the Being asked about my opinion of a service I receive and my


views are being taken into consideration when improving the service situation,
there was a consensus among the groups that this happens only exceptionally in
the mental health sector. It is the phenomenon of selective listening which
prevails. When the user opines that the service is good, his/her view is more likely
to be recognized than when the users views are critical. Also, the more severely
disabled the user, the less likely that his/her views are sought for and considered.
The plenary, with facilitation, recognized the irrationality of this attitude. The
more needy the user the stronger his or her dependence on the services. In an
unprejudiced rights based world, it is the voice of this needy user that should be
taken most seriously when designing, delivering and evaluating the services.

43

The New Lifestyles session set the constructive and relaxed atmosphere, the spirit of cooperation and respect for the diversity of views for the rest of the day.

After lunch and a short session of playing the drums in the large group, the day continued
with role playing exercises. The aim for this session was to help participants to
understand the difference between one,

advocating for someone in his or her

supposedly best interest and two, providing support to the person to advocate for his or
her own will and preference. Again, the session was based on small group work, but this
time the groups were set up randomly and they were mixed groups of users and care
givers. Each group had a counterpart: One of the groups was given a script, requesting
the group to prepare to act the role of the self-advocate. The counter-group was requested
to act on the supposed best interest of the users.

The nature of the exercise is illustrated by the following pair of scripts:

Script 1 for the Self-advocate group: You live in a small neighbourhood, which has a
good cover of trees. But one big tree is growing right next to the side wall of your house.
If you dont cut the tree, the wall will collapse. It is against the law to cut the tree. But
you have no choice. When the authorities come to question you, you have to explain why
you have to cut the tree. Advocate for yourself.

44

Script 1 for the Best interest advocate group: You live in a small neighbourhood,
which has a good cover of trees. But one big tree is growing right next to the side wall of
your relatives house. He lives just across the road. If he doesnt cut the tree, the wall will
collapse. It is against the law to cut the tree. He cuts the tree. When the authorities come
to question him, he wants your help in explaining. You have to advocate for him in his
best interest, that it is better he obeys the law.

Repeating the exercise with different pairs of scripts describing common situations in
India , changing the roles of the small groups (from Self-advocate to Best interest
advocate and vice versa), most of the participants were given the opportunity to
experience how it feels when somebody else advocates for them in their supposed best
interests. Everybody was also given the opportunity to get a feel of being supported to
work out how to advocate for him or herself. When working in the Self-advocate
group, the group was acting as a support network of the elected person who ultimately
role played the self-advocate.

The learning of the role-play session was shared in the plenary. People were asked to
share how it felt when their voice was outweighed by their advocates voice. How did it
feel when they received support to advocate for their own will and preference?

45

The day ended with a better shared understanding of why self-advocacy is needed. How
care givers can support self-advocates? How self-advocacy with support differs from the
best interest advocacy approaches. Non-user participants, while expressing their interest
in further trainings, accepted that the rest of the workshop should be open to users only,
and they could do so without the pre-workshop anxiety on what will happen to their user
relatives/clients.

4.1.3 Day 2 and 3

I have already mentioned that the user identity is much more complex and subtle than
we in the self-advocacy movement often realize. Later in this booklet Amita elaborates
on how she reached her identity, through her lived life, of a non-disabled advocate. Here I
wish to dwell on another variety of advocate, who I encountered between the 1 st and 2nd
day of the user workshop.

One of the participants signed up for the first day, the open house, as a professional, a
resident psychiatrist. At the end of the day he approached the organisers if he could
attend the rest of the workshop as well. In the interactive discourse of the day,
participating and witnessing the sharing that happened on several layers from the heart to
the intellect, not avoiding the body either (in the drum session), he could no longer see
himself primarily as a psychiatrist resident but rather a person who had experienced
trying emotional distress and then opted for becoming a psychiatrist because he had been
46

informed by his own experience. He also understood the importance of self-advocacy and
started to see himself as one with the user-survivor community. He joined the rest of the
workshop and contributed with his dual identity of being a user and a resident psychiatrist
in one person.

The narration of the last two days proceedings is straightforward. The objectives for
those days were to experientially identify and learn basic skills and knowledge that are
needed in self-advocacy.

Communication
Negotiation
Asking for and providing support for the self-advocate
Empowerment

Day 2 started with a more intimate introduction of the participants, who were now all
users. Bhargavi facilitated a Self as Myth a Personal Journey session, where all
participants were asked to describe themselves as mythical figures. And then deliberate
on what it meant to be a hero or heroine in their own lives. We departed from the
framework which is imposed on us by the cultural imperialism of biomedical psychiatry.
We became heroes and heroines rather than mentally ill people, brain-diseased patients.

47

We even departed from seeing ourselves as users. This was a good opening to learn
from each other about how to advocate for ourselves as we are. As we define ourselves.

The rest of the programme was a mix of providing information on and undertake capacity
building exercises on skills required for self-advocacy. I delivered a lecture introducing
the various communication styles, which were then immediately role-played by
participants. Then the art of negotiation was discussed, since self-advocates are
constantly negotiating when performing the roles of self-advocates and communication
skills are integral to fair and effective negotiations. These theoretical deliberations were
followed by role playing exercises which helped the participants to understand how
negotiations happen and the role played by intellectual, emotional and other elements in
negotiations.

The following negotiation tasks were given to groups of participants.

1. Advocating for user at a bank for opening an account


2. Advocating with a coffee shop / cafeteria for holding a mental health self help group
3. Hiring a Group house on rent for users
4. Negotiating with Psychiatrist for changing the medication / against hospitalization
5. Negotiating with the family for inviting user to marriage / festival or other celebrations
6. Negotiating with the family for user to join a self help / peer support / advocacy group

48

7. Advocating to join the gym / holidaying / other recreational / hobby programs seen as
non productive

The second day ended with two unplanned, unforeseen interventions by the two cofacilitators. In the role play on Advocating for user at a bank for opening an account
the person acting as a schizophrenic possessed sophisticated acting skills. He showed
us the image of someone hearing voices in the most stereotypical way. His acting was
powerful. Many people were laughing. Some others were sad and confused. This may be
because they were people who are hearing voices, and found disturbing to be mirrored in
the typical, negative, prejudicial way, in a ... user workshop.

Both Bhargavi and I felt that we had to intervene. While we did not want to destruct the
positive, constructive, collaborating spirit, we had to do something to prevent
stigmatizing each other at the very start of a self-advocacy movement. We wanted to do
something to prevent us to become divided along severity of symptoms or along
diagnostic categories. These classifications are part of the paradigm the cultural
imperialist uses. It was important to bring home to the participants that it was not, and
shall never be our paradigm.

When the official end hour of the day, we, the facilitators asked if the participants could
stay for a little more. To address something that had emerged spontaneously, but which
called for reflection. All agreed.
49

Bhargavi demonstrated an exciting exercise to help normal people get a feel of how
hearing voices can influence life. Several volunteers were asked to sit in front of the
others. They were instructed to listen to one participant who was reading a text aloud.
Three other volunteers were mouthing words, or just making sounds into the ears of those
who volunteered to listen to the text being read out loud. Some of the listeners broke
down within a few seconds. They could not follow the text because of the disturbing
voices. Some of them were crying. After a few minutes each of the voluntary listeners
were asked to report on how the experience, which was just a rough simulation of what
people who hear voices experience on a daily basis. Their report was a revelation. But...

I felt that this exercise was brilliant to help non-voice-hearers understand how it feels to
hear voices. And yet, I also felt that the exercise was a double-edged sword; since it could
also create the belief that voice hearers are so overwhelmed, so disabled by their voices
that they can play no role in self-advocacy.

This apprehension triggered my spontaneous intervention which was a unique experience


even for me. I was there with my anger, with my emotions, with my intellect and spoke
about the hearing voices movement. How people do learn to cope with their voices. How
some can learn to turn voices from disabling/disturbing phenomena to positive resources.
How voice hearers are the same as all of us, users, and how they are different. I
concluded by asking for a non-exclusion policy.
50

The end of the day was dramatic. Everybody left with deep emotions, with the need to
reflect, to do a heart search. Are we indeed ready to include ALL of us who want to join?
Or are we excluding some of us, just because we do not understand? The example came
through the phenomenon of voice hearing. It could have come through other phenomena
as well. It was clear that by next morning each of us had to have an answer: are we
willing to include all users who are interested in self-advocacy? Or shall we start our own
game of cultural imperialism within our own movement?

The third and last day gave a promising answer to those dilemmas. Everybody came back
and we had promising sessions on empowerment. Many of us expressed our commitment
to be inclusive. How? We were also privileged to have an Australian and a Zambian peer
with us. They shared their experience on self-advocacy and peer support from their
countries.

But the haunting question is still with me as I write these lines. Is our movement
inclusive? Or are we copying the cultural imperialists? Who is a peer? Who do we need
to work with? With whom should we build solidarity-based alliances? I firmly believe
that these are among the most pressing questions for the upcoming years in the selfadvocacy movement.

51

4.2 Assisting Self Advocacy in Persons with Intellectual


Disabilities

India has a large network of Parents Associations who interact with each other under a
umberalla organization called Parivar. This umberalla organization has been primarily
advocating for the rights of persons with intellectual disabilities. The advocacy of rights
is not undertaken by persons with disabilities themselves, but their parents as the
representatives of persons with intellectual disabilities speak for their rights. This large
representative organization was founded with the belief that persons with intellectual
disabilities were incapable of pleading their own cause and their entitlements would not
be honoured by the state unless committed representatives spoke for them.

Since,

parents in the main, would desire the best for their wards, they were generally accepted as
the most suitable representatives for persons with intellectual disabilities. The
organization did not, till very recently accept that persons with intellectual disabilities
could be their own spokespersons. They did not also think that there could be a difference
in perception on what they desired for their wards and what persons with intellectual
disabilities may want for themselves.

Around the time that Gabor was visiting India, there was some rethinking in Parivar on
this question and consequently the first self advocacy workshop for persons with
intellectual disabilities was organized in Hyderabad. Mr.Gadkari, the President of

52

Parivar asked if Gabor could facilitate one session with the young self advocates and
since we (Gabor and Amita) were convinced of the need for cross disability solidarity, we
agreed.

Since you cannot support self advocacy without establishing a rapport with self
advocates, Gabor joined the self advocates group from the morning, participated in their
various activities of singing, dancing and game playing before undertaking his own
session later in the afternoon. The bonding time was as crucial to the learning process as
the time spent in directly engaging with the self advocates. In the direct session again
Gabor did not tell the young self advocates what they would require to have their self
advocacy unit take off; rather he asked them what they would require to render their
organization functional. Upon receiving the typical answer that money was needed, he
was able to gently show the young persons as to how much they could do without money
and also what is the most appropriate time and activity for which to seek money. At each
point, he kept sharing with the young advocates how he and his colleagues had set up
their own self advocacy group in Hungary. The self advocates arrived at their own
answers but what Gabor did was to help them reach those answers. It is important to note
that at no point in the dialogue did he lead the young persons to a particular choice.
Instead he continually listened to the preferences expressed by the young persons and
helped them reach their own decisions on the structure of their organization and the
activities that it would carry out by just pointing to the strengths and weaknesses of the
various choices that they were making. Thus for example the young advocates with no
53

resources were convinced that they could not organize an event without a photographer,
Gabor firstly accepted this desire of the young advocates and then dialogued with them
on how best to fulfil their desired goal. The conversation which revolved around cost of
professional services, easy availability of non professional skill was so conducted that at
the end of the conversation the young advocates arrived at the decision that they would
not hire a photographer but have one of them photograph the event and thus save
valuable resources.

4.3 Brainstorming with the ZTRT members

This bottom up methodology was again put to test in a two days brain storming session
that was organized by the National Trust with its Zonal Technical Resource Team
(ZTRT) of cross disability advocates. The National Trust had put in place this team in
acceptance of the belief that persons with disabilities should take leadership in disability
matters and they were especially equipped to undertake this task. At the same time, the
Trust has been aware of the prejudice which subsists against persons with disabilities and
the continual need to devise stratagies to offset this prejudice. A joint reflection of the
ZTRT members was suggested as a useful way of initiating this strategy building
exercise. We (Gabor and Amita) were asked to facilitate this community reflection in
order to strengthen disability rights advocacy.

54

The meeting was initiated by asking the team members to reflect upon the strengths and
weaknesses, opportunities and threats of the disability rights movement in India today.
The analysis demonstrated that there were very many times when a strength could
become a weakness, as a threat could be converted into an opportunity. For example, how
the strength of

disability solidarity could be used to deal with the disunity in the

disability rights movement. Subsequent to this SWOT analysis, the participants were
asked to suggest one activity which they would wish to take up relying upon the strengths
and opportunities and without being thwarted by the weaknesses and threats. The various
participants suggested mega-level activities such as empowerment of women with
disabilities or ensuring accessibility for persons with disabilities. Now, these were
desirable objectives, but they depended on so many external factors that to design a
planned intervention was well nigh impossible. The facilitation methodology adopted
assisted the participants to perceive the weakness of their proposal themselves. This
aspect of the methodology was commented upon by several participants as both educative
and empowering.

4.4 Vidyasagar Chennai9

Our (Amita and Gabor) third encounter with self advocates was at a meeting facilitated
by Vidyasagar at Chennai on 26th of November, 2008. Insofar as Gabors visit to India
9

Vidya Sagar is a twenty year old organization based in Chennai Tamilnadu, which offers programs that focus on
holistic development and education for children and adults with special needs; demystification of disability;
empowering persons with special needs and their families with knowledge and skills, while strongly advocating on
issues of inclusion.

55

was aimed to catalyze self advocacy, it was considered only appropriate that his last
official engagement should be with self advocates. As this was a one day meeting, the
assembled self advocates were only asked to reflect upon two questions:

- One, what did they see as the strengths, weaknesses, opportunities and threats of
the disability rights movement:

- and two

what stratagies would they suggest to enhance the strengths and

opportunities and to minimize the weaknesses and threats.

Whilst the first question was deliberated upon in the group as a whole the second
question was first considered in small groups and then discussed by the group as a whole.
The meeting once again employed community dialogue and reflection to empowers
disability rights advocates.

How should disability rights activists react when they are accorded concessions but do
not get their just due was one question which aroused animated discussion. Whilst all
persons with disabilities felt they were entitled to protest, agitate and refuse, the nondisabled participants pointed out that the reaction could be viewed as churlish. More
importantly, the disability community would need to recognize that the concessions came
from people in the system who believed in the disability rights cause and hence were
bending the rules to the maximum possible. If this effort was not recognized, then
56

disability activists could lose potential allies. Even as the persons with disabilities
recognized that there may be some merit in the contention, they were able to get the nondisabled activists to comprehend the difference between justice and exception making.
Whilst exception making may allow an individual person with disability to get his or her
foot in the door, the disability community would obtain inclusion only when their
demands of justice were fulfilled. This goal would necessitate a persistent voicing of the
dissatisfaction felt by the disability community and this role could not be sacrificed at the
altar of courtesy and good manners.

5 Knowledge Building and Awareness Raising

5.1 With the Bapu Community

Gabor Gombos in his six month visit to India was based at the Centre for Advocacy in
Mental Health, Bapu Trust, Pune. Whilst he travelled through the length and breadth of
the country fulfilling the various engagements we have outlined in different parts of this
report. His preparation for these various engagements as also his core contribution to self
advocacy discourse happened at the Centre. Gabor functioned from the Bapu office from
morning to evening interacting with peers and colleagues six days a week. Thus, running
along with these high profile engagements was the discipline of everyday routine. This

57

routine gave him the community support and the connectedness to both the country and
the disability community, without which it would not have been possible for him to fulfill
the more ambitious commitments of his programme. We mention this to point out that
self advocacy may have an individual face, but it cannot prosper without community
support. Bapu Trust operated as that community for Gabor.

The various activities outlined in this report envisaged persuading the unconverted and
the uninitiated to look at the rights of persons with psychosocial disabilities from a
different perspective. For this enterprise to succeed it was essential that the already
initiated should be convinced with our arguments. The Bapu community thus enabled
non-threatening reflection and allowed for innovation and experimentation. Whilst these
activities were undertaken in an unstructured manner throughout Gabors stay in India,
they were carried out in a more systematic way at the annual retreat of the Trust. It was at
this meeting that we (Gabor and Amita) first tried out the bottoms up approach, when at
the suggestion of V. Bhargavi, we examined the CRPD from the perspective of people
working at Bapu Trust. We explored what contribution the CRPD could make to the
work ethics at Bapu. It was this experimental presentation which even we undertook
with some skepticism that got us to examine what awareness raising, reasonable
accommodation and legal capacity and support would mean at the grass root level.

The CRPD mandate of awareness raising, we contended would require a relationship


between internal work and social advocacy. Persons with psychosocial disability would
58

need to have a defined presence in Bapu. Insofar as both persons with and without
psychosocial disability work at Bapu, there would be a need to continually reflect on the
perception towards and the perception of persons with psychosocial disability. This
would entail setting up ground rules for inter-personal relations, service provision and
administration.

On the right to participation, we asked for a relationship to be forged between


participation and awareness raising and elaborated upon the various dimensions of the
right to participation. The right would require that: each person be involved in decisions
affecting them; all persons understand the mental health advocacy positions in Bapu; and
persons with disabilities be actively consulted in the formation of all Bapu policies.

The concept of reasonable accommodation requires that general policies are modified and
altered to accommodate the specific needs of particular persons with disabilities. The
application of this concept at Bapu would need the induction of the principle of flexible
time, the idea of safe spaces and the need to give value to varied perceptions. It was also
pointed out that these accommodations would not need to be confined to persons with
psychosocial disabilities, but could provide insight to the work culture at Bapu. And on
capacity and support, it was suggested that Bapu may allocate resources for provisioning
of support as well as develop suitable designs for support.

59

This experiment of enabling people to look at the CRPD to discern how it could
strengthen their ongoing work, rather than presenting it as an imposed wisdom from the
top was initiated at Bapu. We have subsequently used this strategy at several forums of
both friends and strangers. However, the initiation of the strategy could have only been
done with friends. A learning which once again brought home to us that every effort to
change the world needs friendly sounding boards before being launched.

5.2 National Mental Health Care Givers Workshop

My (Gabors) first major public activity during my India visit was the first National Care
Givers Workshop. Even before reaching India, I had discussed with my co-trainer
Bhargavi the background and the context in which the Workshop had to be designed to
promote self-advocacy, a rather unknown concept in India, a concept that is often
misunderstood by care givers in those parts of the world where the self-advocacy
movement has gained some reputation. In every community where people with psychosocial disabilities,( including people living with severe mental illness), are seen
incapable to advocate for themselves;caregivers, are seen as the natural support persons
and advocates for their disabled relative or client. The understanding that support is not
equal to speaking on behalf of the other in their best interests, but rather it means an
enabling facilitation of the persons own advocacy for him/herself, is often missing.

60

Care providers, whether they are family members, or the cadres of community care
providers, are important constituencies influencing the Indian mental health and disability
sector. Being well organized, care providers organizations and networks have brought
about significant changes in the mental health sector, showing that they are a formidable
advocacy force to reckon with.

In the last decade, several individual family care givers, the care givers organizations as
well as service providers at the community level, have faced acute dilemmas about the
protection of persons living with a mental illness and intellectual disability, versus their
freedoms. These dilemmas have been particularly intense, against the backdrop of the UN
Convention on the Rights of Persons with Disabilities.

Individual users, the few users collectives in the country, disability activism and the
increasing stories of violations of users rights have heightened the need for a rapid
rethinking of values in the mental health sector. Family members and primary care
providers in health programs have to humanely deal with users who are open about their
dissent to the treatment being given or to their family environment, in a resource poor
sector.

While the CRPD centers the person with psychosocial and intellectual disabilities,
applying the CRPD in the immediate context of family and community requires much
reflection, process and skill. This is a long term activity, involving the creation of a new
61

set of assumptions and premises, hitherto absent in the mental health sector. It also
involves new practices and programs. Family members have agonized over the lack of
alternatives and very poor availability of wholesome resources in mental health. There is
the realization that it is time to invent new strategies and programs of our own, and not
wait for largesse from various agencies.

CRPD served as a timely and comprehensive framework for the workshop, though
Bhargavi and I decided to not have a separate session on the Convention but rather to
streamline its principles and some of the rights enshrined in it into every session.

The objectives of the Workshop included:

To explore the personal worlds of care givers and their own distress / well being
experiences

To help participants acknowledge their own interests and needs in the process of
care giving

To help care givers identify areas where they can do something in order to make
their own lives and their cared ones' more humane and livable

To invite participants to explore together what the CRPD principles mean for them
and for their cared ones

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The methodology was a mix of lecturing and interactive sessions. Role plays were
particularly important, as they provide a useful mechanism by which care givers can
place themselves in the shoes of the cared ones and thus move beyond their prejudicial
attitudes towards people living with mental illness.

The two-day event was attended by more than 20 care givers. Both family members and
primary service providers participated in the Workshop.

The tone of the meeting was set by the ground rules and also by the introductions. Both
sessions emphasized the validity of experiential expertise of both the person with
disability and their care givers. The existence of conflicts between the two perspectives
does not mean that one of them is invalid or distorted by the illness or disability.
Differences in perspectives rather come from differences in values. Negotiating values
played a central role in the role play exercises also.

The information provisioning segment of the Workshop consisted of a conceptual


introduction to self-advocacy, the viewing of a video about traditional healing in
Maharashtra and a short session on recent Western alternatives to bio-medical psychiatry,
including the famous Soteria project10.
10

Soteria project was one of the best known non-medical alternative to drug based biomedical psychiatry. In a
suburban house in San Fransisco, up to 12 young people (who were just diagnosed with schizophrenia) lived
together with lay helpers. There were no therapeutic sessions, activities, drug treatment. The millieu which
suggested that psychosis is a valid experience and recovery does happen, was the healing force. Living through the
crisis in a safe and supportive environment can result in personal growth. The clients of Soteria performed at least as
well as those young patients who received the traditional drug-based treatment in hospital settings.

63

The two-day event allowed participants to share experiences and to learn through sharing.
They became familiar with the concept of self-advocacy and understood the core ideas of
the recovery approaches to mental illness. Some of them publicly challenged the routine
medical way of looking at mental illness as a barrier to recovery.

Two days were certainly not enough to alter prejudicial views acquired over long years of
experiences. There was insufficient time to address some of the practical difficulties care
givers face on a daily basis, though some of them were analyzed in groups and in the
light of the CRPD. Another difficulty arose from the composition of the participants.
While a majority of the participants were family and professional care givers of persons
living with psychotic conditions, a significant minority were professionals working with
people living with dementia. The latter group felt that their concerns were not adequately
addressed in the Workshop. [xx]

5.3 The National Trust Knowledge Workshop

We (Gabor and Amita) were asked to prepare a concept paper suggesting changes in the
National Trust (Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple
Disabilities) Act 1999 to bring it in harmony with the UNCRPD.

64

The consultations on the National Trust concept paper demonstrated to us that the
inclusive and empowering rationale of universal legal capacity was not widely
understood. A difference of opinion which happens after understanding has necessarily to
be respected.

However a resistance which occurs due to stereotypical fears and

prejudices needs to be challenged and informed. It was with this motivation that we
agreed to speak on The promise of the CRPD at a knowledge workshop organized by
the National Trust for its constituent member organizations. The National Trust has a
provision by which registered associations working in the field of autism, cerebral palsy,
mental retardation and multiple disabilities can register with the trust and subsequently
participate in electing the management board of the trust. This statutory organization
therefore has a legally prescribed procedure of ensuring peoples participation. Therefore
addressing the members of the Trust was both imparting knowledge and building
awareness with concerned segments of civil society.

In contrast to the presentations we made whilst discussing the concept paper, where we
accorded centrality to the legal choice, in this presentation we began with the interplay
between social perceptions on disability and the aspirations of persons with disabilities.
We asked the audience if the aspirations changed according to social perceptions of
smartness.

Were the aspirations of persons with autism and intellectual disability

different from the rest of society? If not then what were the barriers to the realization of
their desires, dreams and aspirations.

What were the difficulties that persons with

disabilities and their parents face in the fulfillment of these aspirations?


65

After raising these key questions which, we believe prompt the adoption of a rights based
approach to disability law and policy, we next informed the audience on how a physical,
mental or sensory impairment becomes a disability. The impairment becomes a disability
because the world has not been created in acknowledgement of the existence of persons
with disabilities. This acknowledgment can be obtained through several strategies of
empowerment, an important strategy is the strategy of law.

We next expanded on how the connection between national and international law and
how sometimes the pressure of international community can obtain a better deal for
excluded communities than what they can get with national lobbying alone. After setting
up this background, we took the audience through the key socio economic rights
guaranteed by the CRPD and showed how the right to education, employment, health and
social security would build the capabilities of persons with disabilities. This capability
development would be greatly impeded if persons with disabilities were seen to lack legal
capacity. We acknowledged the fears of parents and careers that the recognition of legal
capacity may result in exploitation and then elaborated upon a concept of support and
how it allowed for persons with disabilities to exercise their legal capacity whilst
protecting them against exploitation.

66

6 Engaging with the Academy : Lectures at NALSAR11, HCU12


and JNU13

Self-advocates are often seen, especially in the mentalealth / psychosocial disability field,
as persons with experiential expertise. People who know through their personal lives
what it means to be stigmatized, marginalized, discriminated, excluded on the ground of
disability. While this is true, self-advocates are more than just experiential experts. They
have skills, knowledge, professional expertise on other (disability related or unrelated)
fields of knowledge. Restraining someone to one role, in our case to the role of a selfadvocate, can, unwillingly contribute to further segregation. Self-advocates are most
needed in areas of stigmatization and exclusion. People belonging to high prestige,
propsperous sectors of society have other vehicles to impact on society and represent
their interests. If someone, who, as part of the marginalized and segregated goes public as
a self-advocate is constrained to that role, he or she will become the representative of the
unwanted. At best, he or she will be seen as an exceptional member of his or her
11

NALSAR University of Law, Hyderabad, an institution of national eminence in the field of legal education and
research, is a residential University established in 1998 under the National Academy of Legal Studies and
Research University Act (Andhra Pradesh Act 34 of 1998) of the Andhra Pradesh State Legislature.
12

The Hyderabad Central University was created by an Act of the Indian Parliament. It has over three decades,
distinguished itself as one of the best centres for teaching, research and innovations in the country.
13

Jawaharlal Nehru University established by an Act of Parliament thirty years ago was set up with the vision that
ideas are a field for adventure. Consequently the University has unhesitatingly experimented unceasingly searched
for diversity of opinions The JNU campus is a microcosm of the Indian nation, drawing students from every nook
and corner of the country and from every group and stratum of society. To make sure that this is so, annual
admission tests are simultaneously held at 37 centres spread across the length and breadth of the country, and special
care is taken to draw students from the underprivileged castes and ethic groups by reserving 22.5 per cent of seats
for them. Overseas students form some 10 percent of the annual intake

67

community. An exceptional disabled, homosexual, poor, untouchable. But no


other dimensions, no other capacities will be presumed. The narrow interpretation of who
is a self-advocate, thus reinforces the prejudices of incapacity, emphasises one-sidedly
the difference, ghettoize the self-advocate and his/her cause into rooms where like
minded self-advocates, at best together with their allies, meet and share. This will have
little impact on society at large.

When my (Gabor) six month India programme to catalyze self-advocacy was designed,
one of the identified objectives was to demonstrate that disability can well live and work
together with capacity. We (Gabor, Bhargavi, Amita) wanted to also target sectors in
society who otherwise would not necessarily be interested in self-advocacy, or in the
rights of persons with psychosocial disabilities.

In my interactions with Amita Dhanda she encouraged the physicist part of me to play a
role in the project. Whilst I liked the idea, I could not imagine how this can be
implemented in practice. And how can this advance disability, let alone mental health
user/survivor disability self-advocacy. Nevertheless, I have always held that selfadvocacy is a beautiful activity exactly because it requires the act of the whole person,
and because my physics background is an irrevocable part of my identity, I consented to
give a number of lectures where my knowledge of physics, my world-view shaped
through my physics and history of physics studies will be utilized. I was then skeptical
how this can relate to the overall objective of catalyzing self-advocacy but put skepticism
68

aside. I hope the reader will understand that this series of lectures indeed contributed to
the catalyzing process, and did so in communities which otherwise could have never
faced the challenge of self-advocacy in the field of mental health.

6.1 Self-advocacy and Paradigm shifts in physics, psychiatry


and the law

We have several times mentioned how the concept of cultural imperialism o helped us
understand the process of oppression in the (psychosocial) disability field. Psychiatry
plays a hegemonical role in the lives of my peers. Psychiatrists can decide where I shall
live, with whom I can meet, what treatment I need. In modernity societies gave exclusive
role to the medical discipline of psychiatry to rule my life, in my best interest.
Modernity also gave legal authority to the mental health regime to deprive me of my
liberty, to incapacitate me, to decide about me. Since the late eighteenth, early nineteenth
century, psychiatry became dominated by one particular approach based on the
hypothesis that mental distress, mental illness, different behaviour are manifestations of a
not yet identified- brain disease.

Modernity is intimately linked with science. Valid knowledge needs to meet the criteria
of science, as established by the Newtonian paradigm. The paradigm includes the
following presumptions:

69

There is a one to one mapping between the cause and the effect. We can predict
the effect if we know the cause, without uncertainty. In the other direction: if we
know the effect and if we are smart enough, we can find the unique cause.

The world is essentially objective. The observer can be clearly distinguished from
the observed. The observation does not interfere with the objective reality.

Both the brain disease paradigm of psychiatry and the shift from natural laws to the
enlightened and scholarly designed laws happened in the era when the Newtonian
paradigm was the standard for how to design just societies. The Newtonian paradigm was
not just standard for how to make science, but it was an overarching world view. It
influenced the scholarly thinking in all areas of human knowledge: from emerging
psychiatry to law.

In psychiatry this led to the idea that the psychiatrists (observers) duty is not to interact,
not to personally, emotionally engage with the patient, as that could cause unwanted
interference, preventing the scientific psychiatrist to make his best judgement, what the
patients problem is and how to help him/her best. Also, this approach held that by
collecting more empirical data on the correlation between brain structural/functional
anomalies and the observed behaviour of the patient, will lead us to prove the one cause

70

for one disease hypothesis. Although this belief has not obtained strict, scientific
evidence, the approach still survives and is seen by society and law as evidence based.

In law, the same paradigm contributed to the belief that legally well trained, morally
highly standing individuals who live in an ivory tower shall decide on the legal disputes,
in an objective manner.

I (Gabor) remind the reader that the combined authority of the brain disease-based
psychiatry and of the law is responsible for many of the human rights violations, much of
the suffering and oppression of people diagnosed with mental illness. Both elements of
the oppressor, i.e. psychiatry and the law, were shaped according to the Newtonian
paradigm.

In physics much happened since Newton. Einsteins theory of relativity and the Quantum
Physics both called for a paradigm shift in physics, which is supposedly the most exact
science. The new paradigm qualitatively differed from the old one, as:

One cause does not determine one effect. The same cause will result in a stochastic
(random) set of potential effects. In the other direction: the same effect can be a
consequence of a number of differnt causes. There is no objective standard to
decide. A well-defined uncertainty is an inherent characteristic of existence.

71

The observer interferes with the observed. There is no possibility to sharply


distinguish between the observer and the observed.

This paradigm shift was in the center of Kuhns studies on how science evolves. His
ideas on paradigm shifts have been applied to other areas of human knowledge as well.

A similar paradigm shift has not happened either in psychiatry or in law. But on the
grassroots an evolving movement for change has emerged. The user/survivor movement
on the one side and the various social justice movements struggling for a deliberative
democratic jurisprudence on the other end, both can be described as similar paradigm
shifts to the Newtonian Quantum Physics one.

User/survivor self-advocates can find allies in the academia if they can scholarly
challenge the ruling paradigms in psychiatry and law. If highly qualified intellectuals are
exposed to the anachronistic and not yet scholarly reflected hegemonical beliefs of
psychiatry and mental health law, if they can engage in a scholarly discourse with
user/survivor self-advocates, then the likelihood for that allience building is higher. If we
find lawyers, philosophers and public health policy experts who are open to see the
problems on the scholarly level, then we can work together with them. Their expertise,
their contacts, their public professional spheres can be made accessible to our movement
to continue our struggle together.

72

My lecture at NALSAR, HCU and JNU was based on the previous grounds. The
audiences were different, so I changed the style and the focus of my lecture respectively,
to engage with the actual audience, without compromising the goal: to gain support to
facilitate intellectual interest to listen to those who challenge the current legally backed,
biomedically dominated psychiatric regimes, which too often rely on force. Let the
challengers be qualified scholars or mentally ill people.

At NALSAR my audience consisted of jurisprudence students. There I focussed on how


the Kuhnian theory of paradigm shifts can translate to the evolution of jurisprudence.
Disability rights implications were used rather as illustrations. Nevertheless a good
discussion on what the CRPD paradigm shift from substitute decision making
(guardianship) to supported decision making means in terms of jurisprudence was
triggered.

At HCU where the audience consisted of established philosophers and philosophy


students, the central theme of the presentation was the demonstration of the
paradigmatical self-inconsistencies of the currently dominating biomedical psychiatry.
Then the debate addressed the moral philosophical question: On what ground modern
societies give legal authority to treat people against their will or in the absence of their
consent, in ways that conflict with the human rights, in mental health regimes based on
self-contradictory theoretical presumptions.

73

At JNU the central problem was phrased in the public health framework. I discoursed
with the audience around the question: What would happen if forced psychiatry were
abolished by law? Statistical evidence does not support the presumption that people
living with mental illnesses are more dangerous than others. The fear of coercion may
discourage a number of people in distress to proactively seek help. Whilst they need
support, they do not want to be forcibly treated, legally incapacitated. I submitted that the
abolition of force could result in a marginal increase of violence in society. On the other
hand, mental health systems would be motivated to be more creative in finding
alternative ways to help people in extreme distress. As coercion, incapacitation would not
be a threat, more people in need would proactively seek support from services. I also
emphasised that in this era of evidence based policy making, laws and policies are still
based on the prejudicial presumption of dangerousness and incapacity in the field of
mental health. People deemed to belong to either of these categories can be forced to
treatments based on self-contradictory assumptions.

The contentions put forth by Gabor in his academic lectures are not unique. Bio-medical psychiatry has
been subjected to such like interrogation by social psychiatry. The difference between these other
critiques and Gabors lectures was that in Gabors case the authority of the speaker came not just from his
scientific/scholarly skills and knowledge, but this knowledge coupled with his personal experience of
oppression as a man living with the diagnosis of a severe mental disorder. This experiential knowledge
made it difficult for the listeners to dismiss his exposition as one more point of view. It was this
consequence which reinforced our belief that when the self-advocate shows his or her other skills then

74

he or she can expand the discourse to find allies who can help in challenging the oppression coming from
the combined power of current biomedical psychiatry and mental health laws.

6.2 Speaking Truth to Power: Lecturing on the Institution of


Human Rights Defenders NALSAR, Hyderabad and ILS Pune14

As part of my academic programme, Amita raised the idea of lecturing on the institution
of human rights defenders for law students. One of the objectives for such a lecture was
to engage with and challenge cynicism, especially amongst the youth. Future lawyers
share their sentiments and perceptions of societal reality with others from their
generation. And, yes, cynicism is there. Disillusionment is very much there amongst the
elder generations too, when we address human rights as a theme. Has anything changed
for the better due to the human rights work? Or have the beautiful original ideals of
justice, equality, freedom all become trapped into governmental and intergovernemntal
beaurocracies? Are they used and abused by governments in their games of international
politics?

Lawyers work in a field, as international documents on human rights defenders also


recognize, where, if informed and willing, can contribute to the protection and promotion
of human rights through their professional work. But why should young law students
14

The Indian Law Society was established in 1923 as a Public Charitable Trust registered under the Societies
Registration Act. The Indian Law Society established the Law College in 1924, which has since then established
itself as a premier institute for legal studies in India

75

trust more passionately in the power of human rights than anyone else? Can the letter and
spirit of the law be used to change this planet into a more just and humane place to live
on?

These questions have never been far from me. They have never been alien to me. Neither
the temptation to answer them in the negative. I (Gabor) lived my childhood and youth in
a country where there was no human rights discourse. We were told that we belonged to
the progressive part of the world where injustice no longer existed. Reality showed a
completely different picture, but in the soft period of Hungarian communism, people
shared their views, at best, in closed friendly and family circles, on how different the
ideology and the lived reality were. Also, as an adolescent, I had already been a person
with a psychosical disability. As a recovery strategy to survive my childhood traumas I
paid no attention to other issues than the ones I had already committed myself: to become
a physicist and to care for my mother, who by that time was already seen by the family
and society at large as a chronic mental patient. The injustice that manifested itself in
how the community excluded her, how she was forced into electroshock treatment more
than hundred times, how society did not provide any support for her to exercise her
parental duties all this was just enough for a youngster to deal with. I was certainly
most cynical about the positive, liberating, humanising power of human rights, at that
time, if I was was thinking about it at all.

76

When much later, life shifted me from physics to user/survivor self-advocacy, I was still
not aware that my peers and I were becoming human rights defenders. We were simply
supporting each other, sharing our experiences both on our distress and on how mental
health systems further abused us, exactly when we were in the highest need of human
support. Many of us had experienced forced treatment, deprivation of liberty,
incapacitation. We understood that we had no choice: we had to give a voice to tell the
world what we had survived. And what we had aspired for.

It happened that mine had become one of the lead voices of the European user/survivor
self-advocacy movement. I was profiled in Kerry Kennedys human rights education,
awareness raising and promotion project, Speak Truth to Power, as one of the 51 leading
human rights defenders of the world. As a matter of fact, I have become a celebrity and
also text-book material for human rights education in some countries.

While my grassroots work gave me experiential expertise, I knew it was not enough. If I
wanted to contribute to larger scale changes in the lives of people with disabilities, I had
to understand the big mosaic of what we call human rights.

What is human rights? This was the central question in both my Speaking Truth to Power
lectures in India. Is it a legal subject? Is it a concern of lawyers? Is it international
politics? Or is it a large discourse, open to anyone who is willing to give something from
him/her? What technical knowledge is needed if one wants to act as a human rights
77

defender? Does one need to be trained in a particular profession to become a human


rights defender? There had been many questions in my mind before the lecture was
delivered.

Both in Hyderabad and in Pune I started with sharing the story of my life that led me to
see myself and to be seen by others -, among other identities, as a human rights
defender. This sharing was necessary, as without explaining how it felt for a young boy
to witness the abuses against his mother; how then it felt to loose her in a medical
experiment she was subjected to without her informed consent; finally how then it felt
when I myself was treated against my will with powerful mind and body altering drugs;
without all these, students could not understand why at one later point in my life I gave
up my original profession and started to work in the disability rights field.

First person stories are powerful. We experienced this many times also in the UN while
negotiating the CRPD. In the NALSAR auditorium the speaker, the internationally
recognized human rights defender turned into a real person, with whom a different type
of rapport can be established than with a living monument.

And at NALSAR the rapport was established fast. With Amitas sensitive and enabling
facilitation, students felt free to ask questions in an uncensored manner. Questions about
madness, about how international politics abuses human rights, about what role I saw for
the developing world to promote disability rights, and much more. What threats are
78

there? How does international human rights protects the work, and often the lives of
human rights defenders? Questions which are seldom asked by more politically correct
audiences triggered a good discussion. Genuine people discoursed genuinely about the
blood and flesh of human rights activism. By the end of the lecture people understood
that one can become a human rights defender from very different walks of life. There are
many good causes that invite devotion to the field.

At the ILS Pune, there was no real opportunity for the interactive part of the programme.
But in both places students learned a little about the institution of human rights defenders,
through the example of a user/survivor self-advocate. They learned a little about selfadvocacy.

6.3 Dialoging with the imperialist : Panel Discussion in the


Indian Psychiatrists Society

As already recounted, the various activities carried out by Gabor during his visit were in
the main a planned exercise. Amongst the engagements which were was an exception to
this rule was the participation by Gabor in a panel discussion organized by the Indian
Psychiatric Society (South Zone) on the Marriage Rights of Persons living with Mental
Illness. This unplanned engagement which happened at the midpoint of Gabors visit
resulted in substantial learnings on the politics of self advocacy, reasonable
79

accommodation and support. Keeping in view the objectives of this monograph, it is


appropriate that the various developments surrounding the engagement are recounted in
detail.

The Invitation

As a part of its Continuing Education Program Indian Psychiatric Society (South Zone)
decided to organize a debate surrounding the question whether persons living with mental
illness should be allowed to marry? They planned to have two psychiatrists to speak for
and against the issue and wanted me (Amita) to moderate the debate. I (Amita) responded
to this invitation by asking the organizers to move out of this dichotomous way of
addressing the issue. The United Nations Convention on the Rights of Persons with
Disabilities (UNCRPD) had placed the marriage rights of persons living with mental
illness beyond the pale of debate by unequivocally recognizing that persons with
disabilities (which included persons living with mental illness) had a right to marriage,
procreation and parenting. In the circumstances whilst a panel discussion deliberating on
the difficulties surrounding the realization of the right may be in order, to debate on the
existence of the right was politically retrograde. Consequently I suggested that the IPS
should set up a panel of caregiver; user/survivor and psychiatrist to deliberate on the
marriage rights of persons living with mental illness. I also expressed my willingness to
facilitate this discussion. The Secretary of Indian Psychiatric Society (South Zone)
accepted this suggestion with alacrity. I mistook promptness for understanding and
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presumed that the organizers of the IPS had accepted my suggestion in the same spirit in
which it was given. My misunderstanding on this count came home to me as the event
unfolded.

The Preparatory

In our preparation for the event, Gabor queried me several times on my strategy for the
evening.
Other than recounting the sequence in which the speakers would speak I did not accord
great significance to his question. I had decided that the presentations will start with the
psychiatrist, followed by the caregiver and be concluded by Gabor as the user/survivor. I
felt this sequence would privilege the user-survivor voice as Gabor could both say his
own thing and challenge the counter opinion. In order to familiarize ourselves with the
venue, the participants and the other panelists we decided to attend one of the scientific
sessions scheduled in the morning. The folly of this decision came home to me only
much later. The session was a live demonstration of professional negativity. Speaker after
speaker got up to inform the audience of the incompetence of persons living with mental
illness. They therefore saw no reason to deliberate on questions of personal autonomy,
informed consent or participation by persons living with mental illness. The morning
discussions left me irritated and Gabor angry and traumatized. It was significant to note
that in the ensuing lunch whilst a number of participants sought me out Gabor was in the
main left alone. The professionals did not demonstrate any inclination to strike a
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conversation with Gabor either during the lunch or after the post discussion dinner.
Ordinarily an internationally renowned foreigner would be much in demand. It seems,
that for the delegates, Gabors patient status prevailed over his international fame and
advocacial expertise.

The Discussion

As planned the discussion was started by the psychiatrist on the panel who conceded that
marriage rights should not be denied to all persons living with mental illness. This
concession was quickly followed by the assertion that the recognition of marriage rights
for some persons living with mental illness should not be read as recognition of the right
for all persons living with mental illness. The panelist made the aforesaid assertion on the
strength of the expertise acquired through professional practice. Such caution the panelist
insisted was necessary if the marriage rights were not to generate more unhappiness for
both persons living with mental illness and their families.

The caregiver on the panel pointed out that persons with disabilities needed support to
enable them to realize all their rights but psychiatrists seemed to be using their expertise
to stress upon the lack of competence in persons living with mental illness. She
bemoaned the negativity of the expert which prevented them from devising mechanisms
of support and strategies of empowerment. The caregiver conceded that with the present
state of skill development and support not many persons living with mental illness could
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exercise their right to marriage. However, unlike the psychiatrists, she did not see the
incompetence as an inevitable corollary of mental illness, and consequently continually
pointed to the stigmatizing attitudes and absence of support which prevented persons
living with mental illness from asserting their natural rights of affinity and affection.

Gabor who was the user-survivor on the panel informed the audience how marriage along
with employment was a major channel of social communication. Denial of the right to
marry thus was denial of social connectedness. This exclusion was practiced against
persons living with mental illness due to a prejudicial attribution and not because they
were inherently incapable. He then narrated a number of live histories of persons whose
psychiatric diagnosis prevented them from obtaining support in the conduct of their
matrimonial relations which would have been routinely extended to others. Gabor made a
strong case for equality and non discrimination and a right to marry for persons living
with mental illness on an equal basis with others.

The ensuing discussion was primarily a reiteration by the psychiatrists on the floor of the
opinion proffered by the psychiatrist on the panel. Every liberal opinion on the rights of
persons living with mental illness was either shot down with the arrow of incompetence
or due to the impossibility of communication. It is ironical that none of the interveners
saw a contradiction between their contentions and a user-survivor sitting on the dais
speaking otherwise. My concluding exhortation stressing on the need for psychiatry to
reinvent itself and to reorganize its practice in consonance with the human rights of
83

persons living with mental illness was accepted on the surface but without any real
understanding. The psychiatrists were able to stomach the challenge of a colleague from a
different discipline, they were willing to engage with me to arrive at consensus but not
one of them was willing to dialogue with Gabor to reach a similar understanding. It is
important to note that even those psychiatrists who were in agreement with Gabor
preferred to communicate their agreement to me rather than to directly dialogue with
Gabor. No wonder Gabor felt the professionals who were meant to extend care and solace
to persons living with mental illness only diminished him and rendered him invisible.

6.4 Dialoging with the

imperialist : the User-Survivor

Viewpoint

When in Rome, do as the Romans do goes the old saying. Mental health field is
paramountly dominated by the psychiatric community, so, arguably, self-advocacy may
wish to enter a dialogue with representatives of that community, to challenge their views,
to inform them about the user/survivor opinion, to obtain entry into conference rooms
of policy making etc. In fact, many of leading self-advocate colleagues in Europe, others
in the national arenas, spend most of their time

attempting to

dialogue with

psychiatrists.

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The IPS Chennai experience is not exceptional. Feeling diminished and retraumatized at
large psychiatric meetings has been a regular experience.

Being the only (or one of a very few) user/survivor(s) among a large number of
professionals alone would be disempowering. The outcome would be tokenism, at best.
However, difficulties are not exhausted by the numbers. Other factors contribute
significantly, such as:

The agenda is set by the psychiatric profession, unlikely to represent


user/survivors real concerns.
The theoretical, conceptual, attitudinal framework is determined by the medicalbased, paternalistic approaches, giving little space to user/survivors aspirations
towards self-determination, empowerment, access to support.

The interactional space is governed by the dynamics adopted by the biomedical


community. Speakers, participants are identified through their titles (Prof, MD)
and affiliations (hospital, research institute). Being only a Mr or Ms means not
having a qualification required by the community to be competent in the
discourse.

85

The language used to describe people and their issues, again, comes from the
biomedical assumptions. Typically people with psychosocial disability will be
called patients, rather than users, let alone survivors. This imposed language
gives little space to linguistic representation of the self-advocates selfdetermination. Challenging the adopted language on the venue is difficult though
may be attempted as the next example demonstrates.

In 2002 I participated in a heated seminar in Bulgaria, where inhuman and degrading


practices widely used in Bulgarian psychiatrists was criticized by a number of humanand disability rights organisations. The session was dominated by leading local
psychiatrists, who wanted to defend their practices, such as unmodified electroshock,
unlimited seclusion of their patients. When I used the term survivor, I was ordered to
refrain from such language. Then I asked whether the term cage user would
adequately describe a person restrained in a cage in a mental health facility. Or would
cage survivor work better? Some of the psychiatrists started to understand why
survivor of services can be a factually correct expression, difficult to replace by
anything else.

As psychiatrists feel at home, they are unlikely to control their conduct and
readily use all the disqualifying

techniques described under Cultural

imperialism.

86

In spite of the traumatic effects and the low efficacy of such meetings, many in the
user/survivor movement think that dialogue with the ruling profession needs to be
maintained. Is there a way to prevent the pitfalls outlined above?

My experience at the Voice of Soul and at the Hungarian Mental Health Forum indicate
that there are such ways.

The most radical remedy is to change the arrangements from the very beginning. Instead
of going to attend meetings of psychiatrists, users/survivors can host our own meetings
on issues that are of concern to us and invite psychiatrists, including some supportive
ones to them. In order to strengthen the user-survivor perspective other reputable experts
(academics from social sciences, activists from other marginalized groups and the social
change movement) can also be invited.

At the initiation of the meeting ground rules addressing issues such as language, equality
of opportunities to participate, leadership of people with lived experience and recognition
of experience as expertise, no titles and affiliations used to identify peoples positions
should be provided to the invitees. A five minutes discussion and formal adoption of the
ground rules at the start of the meeting introduces a sense of democratic, non-hierarchical
climate, conducive to open dialogue.

87

A workshop on clinical drug trials can serve as a good example to this approach.

When the Mental Health Interest Forum raised concerns about unethical clinical drug
trials on psychiatric inpatients in the absence of genuine free and informed consent in the
Hungarian and international media, the psychiatric establishment attempted to disqualify
us as insane people. Then we decided to host a workshop with the purpose of reaching a
consensus on the need to regulate clinical trials, make the right to free and informed
consent absolute in medical experimentation and adopt principles on monitoring such
trials including the participation of user/survivor experts and organisations in the
monitoring. The invitations were made in the spirit described above and I (Gabor)
facilitated the meeting in the light of the ground rules. The initial positions of the
participants were highly diverse. Leading psychiatrist and representatives of the national
drug administration did not even recognize clinical trials as medical experimentation. As
the deliberations proceeded they felt compelled to give up this position. A number of
users/survivors reported on their experiences as subjects of clinical trials without free
and informed consent.. Those reports changed the climate of the meeting. By the time
discussion of the Forums proposal on principles for monitoring drug trials was started,
nobody felt that an objection would be acceptable. Next year the Ministry of Health
issued a new decree on clinical drug trials,which included references to monitoring and
free and informed consent. The ministerial decree was a diluted version of the proposal
submitted by the user/survivor controlled Mental Health Interest Forum.

88

7 Civil Society Sensitization

7.1 Child Rights and Children with Disability

As already mentioned, raising the disability rights question in a mainstream forum was a
key strategy employed in this project. The effort was to demonstrate that the aspirations
of persons with disabilities were not dramatically different from the rest of humanity and
also to show that absence of -communication between the disabled and the non-disabled
world was not only disadvantageous to the disabled world. This argument was presented
at several forums an important one in terms of impact was the international consultation
on Child Rights organized at NALSAR University, Hyderabad. This consultation brought
together persons from the governmental and non-governmental and academic community
to dialogue with each other on the issue of Child Rights and social duties. The
consultation was an effort to break the stranglehold of specialization where persons
working on any one issue of Child Rights were unaware of the discourse on other issues
in Child Rights. The situation thus was that even child rights specialists were ignorant of
several key dilemmas in the realm of child rights. The consultation was thus organized to
enable specialists in Child Rights to dialogue with each other. It was at this forum that
Gabor and I (Amita) were invited to speak on the Rights of Children with Disabilities.

89

In our joint presentation, we (Gabor and Amita) firstly highlighted how the child had
been constructed in the Convention on the Rights of the Child (hereinafter CRC) and the
manner in which the issue of child participation was visualized in the CRC. Our
presentation took the participants through various provisions of the CRC to show how
best interest of the child, which is primarily what the adult world considers is good for
the child, was the ruling paradigm of the CRC. The CRC makes mention of the evolving
capacity of the child and allows the child to assert his or her opinion but such opinion has
to be accorded weight in accordance with the age and maturity of the child. Article 12 (2)
of the CRC recognized that the child had a right to be heard but conceded that such
hearing need not be in person. The Article does not visualize the provision of assistance
to the child for the exercise of the right to hearing.

On an analysis of the various provisions of the CRC, we concluded that the convention
primarily constituted the child as a helpless and immature being. The text of the
convention read more like a charter dividing the responsibility between the state and the
parents instead of asserting the rights of the child. The qualified nature of civil political
rights in the CRC further underscored this outlook. Even as these inadequacies of CRC
were pointed out, it was simultaneously conceded that the CRC in making mention of the
evolving capacity of the child was still ahead of its times. However, the question of child
rights participation has substantially moved since the CRC and to show the direction of

90

the movement we proceeded to examine the manner in which legal capacity was dealt in
the CRPD.

The CRPD like the CRC declared that best interests of the child shall be a primary
consideration in formulating and implementing child rights laws and policies. However,
Article 7 (3) of the CRPD recognized that children had a right to freely express their
views on all matters affecting them. Whilst their views (as in the CRC) were to be given
weightage according to the age and maturity of the child, this article (unlike the CRC)
required that children be provided with disability and age appropriate assistance to realize
their right to participation.

The consequence of this formulation thus became that

children with disability were in some ways better placed to have their voices heard than
children generally.

A running theme of the CRPD negotiations was that the new Convention was not creating
new rights but was customizing already recognized rights to enable children with
disabilities to avail of them. This principle also found its way in Article 7 (1) which
guaranteed to children with disabilities a quality of human rights on an equal basis with
other children. The question then is does the principle of equality only move in one
direction whereby children with disabilities can get the same as other children or are
other children also entitled to get what has been promised to children with disabilities? It
is significant to note that Article 7(3) promised both disability and age appropriate

91

assistance. This age appropriate assistance would be as much needed by children as


required by children with disabilities.

The CRPD is the latest entrant into International Human Rights Law. If the CRPD is seen
to also contribute to human rights jurisprudence, and not just viewed as an articulation of
disability human rights, then it is possible to utilize this latest human rights Convention to
enhance the protection provided to other human rights. However, for this to happen, it
was essential that disability human rights are not perceived as only concerning persons
with disabilities. If this is done then the CRPD can be usefully employed to increase the
gains of participation for all children. After all, if children with disabilities, who are
considered to be more helpless and immature than other children, have been accorded
potent support to realize the right of participation, then it is ironical that the same support
should be denied to other children.

Whilst one part of our presentation demonstrated the larger human rights benefits of the
CRPD, the other part showed why children with disabilities needed their own customized
discourse. In this half, the marginalization and exclusion experienced by children with
disabilities was highlighted and the strategies devised by the CRPD were underscored. A
critical strategy being the twin track approach whereby the concerns of children with
disabilities found voice in both a dedicated article and in the general articles of the
CRPD. By this strategy, the concerns of children were not ghettoized in one article but

92

informed the entire CRPD. Further the CRPD unlike the CRC placed children and not
parents at the centre of the child rights discourse.

7.2 Reaching out to Womens Groups: the Lecture at Anveshi15

As part of the strategy of building alliances with other excluded groups we accepted an
invitation from Anveshi, a leading womens rights organization in Hyderabad to speak on
the Rights of Persons with Psychosocial Disabilities. Insofar as feminist thought
privileges personal experience, Gabor decided to make his presentation inspired by his
lived experience.

He shared with the audience his experience of being brought up by a

single mother who lived with psychosocial disability. He narrated how he practiced the
prejudice against persons with psychosocial disabilities till he was diagnosed with mental
illness. In fact, even after his diagnosis, he continued to believe that whilst other persons
living with mental illness conformed to the stereotype of incompetence and
dangerousness, he was in some ways different. His interrogation of the social stereotype
happened when he stopped disassociating himself from other persons living with mental
illness and in asserting his own humanity accepted the humanity of all. The psychiatric
establishment, he pointed out, puts out a pejorative image of persons living with mental
illness and this image gets perpetuated because persons living with mental illness begin

15

Anveshi was set up in 1985 in Hyderabad by a small group of activist-scholars to provide resources to research
and develop a feminist theory relevant to women's lives in contemporary India. Today it is one of the foremost nonuniversity research centers in India

93

to internalize it. In order to recover, persons with psychosocial disability need to


challenge this stigmatizing image.

Biomedical psychiatry, Gabor pointed out, needed to be questioned because it only had
pathological explanations for the different life experiences of persons living with mental
illness. To illustrate this point, Gabor informed the audience of the study of a leading
researcher who worked with people who heard voices. This research was initiated when
the researcher wondered why all persons who visited psychiatric establishments only
heard evil voices. He consequently put out an advertisement asking people who heard
voices to contact him. Once the data base of people who heard voices was not restricted
to psychiatric institutions, the researcher found that people did not hear only evil voices,
but also heard good and supportive voices. The point primarily was that hearing voices
was not in itself pathological or dysfunctional. There were varied life experiences which
caused these voices to assume evil manifestations for some people. It was the evil
manifestations that people found problematic, however psychiatry indiscriminately
pathologized the experience itself.

7.3 Public Lecture: Force is Not Mental Health

Amongst the last major public engagements that Gabor fulfilled in India was a public
lecture at Pune entitled Force is not mental health. The lecture was organized and

94

delivered in the backdrop of the impending bereavement of leaving a supportive


community and all the uncertainty which the global slow down was imposing on the nongovernmental sector.

Gabor in his lecture with the aid of graphic videos showed the torturous practices
inflicted on persons with psychosocial disabilities in the name of treatment. He specially
drew attention to insulin coma therapy and electro convulsive therapy. Even as he
conceded that a degree of experimentation accompanied all scientific innovation, it was
important to appreciate that in the case of persons with psychosocial disabilities these
experiments were not just conducted without consent, they were inflicted with force. It
was this experience of force which continued to traumatize people who had experienced
it, and for a number of persons with psychosocial disabilities, it was this experience
rather than the so called ailment which prevented recovery. If the purpose of therapeutic
interventions was to promote mental health then these interventions when forcibly
administered harmed, rather than protected mental health. It was appropriate to reexamine the issue of force in mental health in the light of the UN CRPD. The new
convention frowned upon the use of force even if it did not expressly prohibit it.

In the ensuing discussion the issue of absence of judgment and lack of insight in persons
with psychosocial disabilities were brought up. Questions were also raised on whether the
speaker was asking for a total ouster of psychiatry. Gabor in his reply clarified that the
quarrel was not with psychiatric interventions but with forced psychiatry. In continuing to
95

rely upon justifications such as lack of insight the community of psychiatrists was taking
the easy way out of using legal force instead of developing skills of dialogue and
persuasion. Further people voluntarily seek any intervention which people find to their
benefit. The fact that the aid extended by indigenous medicine and faith healers was
accessed without the force of law is a case in point. There was no reason to believe that
psychiatric interventions would be an exception. If such intervention had to be
administered forcibly then it was only appropriate that the administrators of force do
some soul searching.

8 Public Policy Advocacy

8.1 National Trust Consultations

After Indias ratification of the CRPD, there has been an incessant pressure from the
disability rights community to bring the Indian disability legislations in conformity with
the CRPD. One such legislation is the National Trust for the Welfare of Persons with
Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999. Insofar
as the National Trust was keen to make the legislation CRPD consonant it requested us to
suggest how the legislation needs to be changed. We (Amita and Gabor) firstly drafted a
concept paper which highlighted the kind of changes that would need to be incorporated

96

in the National Trust Act, if it has to honour the commitment of full legal capacity and
support mandated by the CRPD. The concept paper also suggested that it may be
appropriate for the National Trust to extend the umberalla of support to all disabilities
instead of confining itself only to the four named disabilities. Such an expansion it was
contended would strengthen the disability rights movement and would also make a
stronger argument for the establishment of support networks.

In fulfillment of the CRPD mandate of civil society participation, it was proposed that
this concept paper shall be discussed in four zonal level consultations in Bangalore,
Gauhati, Ahmedabad and Chandigarh. The learnings obtained from the consultations
which were held at Bangalore and Gauhati caused us to call for the cancellation of the
West and North zone consultation and to suggest a modification of the procedure by
which the law reform exercise should be undertaken.

We found in both Bangalore and Gauhati that whilst civil society members were aware of
the ground level difficulties faced by persons with disabilities, they had little or no idea of
what role if any could be played by the law to alleviate these problems. Since their
understanding of the law was less than elementary, the civil society members were unable
to appreciate the law reform suggestions made in the concept paper. Since they viewed
guardianship as an unalterable legal institution, they found it difficult to respond to a
proposal which was replacing guardianship. That such replacement had necessarily to be
accompanied with policies and programmes which created widespread support for
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persons with disabilities was often not understood. Interestingly in both meetings persons
with disabilities though present in small numbers gave a vociferous endorsement of the
support model. It was also noted that the parents groups felt proprietorial towards the
National Trust Act, hence any expansion in the beneficiary base of the statute was
strongly resisted. An oft voiced concern was that the expansion of the beneficiary base
would reduce the resources available to the included disabilities. That an expansion could
enhance the budget available was beyond comprehension.

Both the Bangalore and Gauhati workshops showed us that consultations with civil
society cannot predate awareness and capacity building programmes on both the CRPD
and the disability legislations in the country. Without such capacity building prorammes
if consultations are conducted with civil society then such consultations yield little
benefit and only reinforce subsisting prejudices.

Other than the poor knowledge base on CRPD and Indian disability law, the lack of
diversity in the persons invited was the other major weakeness of the civil society
consultations. As already mentioned persons with disabilities were noticeable by their
poor presence; Disabilities not covered by the National Trust Act were singularly absent.
The concept paper was asking to expand the definition of disability in the National Trust
Act. It was necessary to discuss the feasibility of this proposal with both the beneficiaries
and the target groups. However, whilst the people representing the included disabilities
were invited in sufficient numbers, the persons with disabilities who would benefit from
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the proposed amendment were almost systematically excluded. A possible reason for this
omission could be that the civil society consultations were organized by those disability
organizations which are already included in the National Trust Act.

8.2 The Bill of Rights

The Indian legal order regulating the status of persons with psychosocial disabilities is
primarily deprivatory in content. The law presumes that persons with psychosocial
disabilities lack competence to take their own decisions and are violent hence a danger to
self and society. In order to counter the various social stereotypes subsisting against
persons with psychosocial disabilities a Bill of Rights movement was inaugurated by a
group of organizations committed to the rights of persons with psychosocial disabilities.
The sentiment informing the movement was that rights are asserted, not granted. In order
to know what rights should be asserted for persons with psychosocial disabilities, the Bill
of Rights movement conducted public meetings in different parts of the country to create
a people prompted charter of rights. The movement was presenting this charter at a
concluding meeting organized in Delhi in October, 2008 and asked us (Amita and Gabor)
to address them on the relevance of the CRPD to the Bill of Rights movement.

The various leaders reporting on the Bill of Rights movement informed how the right to
dignity was continually asserted by persons living with mental illness. It was this right

99

which influenced the discourse on forced interventions and legal capacity. Whilst there
were differences of opinion on the right mix of protection and autonomy desired by
persons living with mental illness, there was unanimity on the desire for protection as a
right and not an imposition.

Since our presentation on the Bill of Rights and CRPD happened after the reports of the
regional consultations, we were able to connect the on ground aspirations of persons
living with mental illness with the guarantees incorporated in the CRPD. However
before doing so we engaged with the participants on the nature of the rights discourse and
the social and legal barriers which prevent persons living with mental illness from
asserting their rights. Our strategy of moving from the participants aspirations to the
CRPD resulted in the participants not seeing the CRPD as an alien document but having a
sense of ownership on it. We strengthened this sense of ownership by displaying two
slides which connected the rights included in the Bill of Rights with specific articles of
CRPD. We felt it was necessary to cultivate this sense of ownership, if the CRPD was to
be employed to strengthen grass root movements. After connecting the Bill of Rights
with the CRPD, we also acquainted the participants with those rights which were
included in the CRPD but did not find place in the Bill of Rights. These were the right to
education; right to participation in political and public life; and right to participation in
cultural life; recreation; leisure and sport. The exclusions also demonstrated to the
participants how even as they were challenging the social stereotype of persons living
with mental illness, they were also falling prey to it.
100

8.3 The Efforts That Did Not Work Out

In the cross disability connections one of the lectures Gabor was scheduled to deliver
related to blind mathematicians. The lecture was planned after Gabor learnt that the
Indian Disability Law exempted blind persons from learning mathematics. The
exemption was evidently included to accommodate the disability of blind persons;
however this ostensibly benevolent exemption also prevented blind persons who were
otherwise inclined to learn mathematics.

Such a consequence especially happened

because the exemption had found its way in the law. There is a world of difference in
incorporating a discretionary provision whereby blind persons can seek exemption from
learning mathematics and making a rule that they shall not learn mathematics. Such a
total embargo we believed only reinforced popular prejudices and stereotypes on blind
persons. Since persons with psychosocial disability continually encounter prejudiced
exclusion, we thought this exclusionary provision could be a useful cross disability point
of dialogue. And to that end, Gabor planned to lecture on the contributions of some of the
most gifted blind mathematicians in the world. Unfortunately, due to logistic and time
constraints, this lecture which was once planned with the National Federation of the
Blind and once with the Blind People's Association Ahmedabad could not work out.

101

We have in this report shared how a multi faceted self advocate and multi tasking
advocate can join forces to open otherwise closed doors. We wish to however stress that
a number of these institutional doors opened when persons with open minds personed
these institutions. Gabor lectured at Hyderabad Central University; Jawaharlal Nehru
University; and National Academy of Legal Studies and Research; ILS Law College
because at each of these places, there were people who were interested in listening to
what he had to say. None of these institutions specialized in mental health questions
though all of them dabbled with it from varied perspectives. National Institute of Mental
Health and Neuro Sciences, Bangalore is the premier institution engaging with mental
health matters in India. Amita has worked with several professors in the institution and
yet her effort to organize the psychiatry and physics lecture at NIMHANS failed.
Subsequent efforts to try and comprehend the reasons for the refusal were unsuccessful as
they were greeted with a bland there is no vacant slot response. Considering the
invisibilization Gabor experienced at the IPS meeting, we have often asked ourselves as
to which response would we prefer: the frank prejudice of NIMHANS or the pretended
liberalism of the Indian Psychiatric Society. We are still reflecting.

9 The Right to Reasonable Accommodation and Support

This program was devised to make a case for the capacity of persons with psychosocial
disabilities. Hence whilst there was an intellectual understanding of the existence of
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disability; there was inadequate provision to deal with the disability. While the self
advocate was being applauded for performance and delivery, sufficient provision was not
made in the design to prevent dysfunctionality and non performance. Prevention of
dysfunctionality and non- performance required that the special needs of the self advocate
were reasonably accommodated and a specific support required by the person with
disability was put in place.

In this segment of the report, we examine the issue of reasonable accommodation and
support utilizing the learnings from Gabors India programme.

What are the things we ought to have planned for?


What support measures did we put in place when we realized the error of the
design?
What is meant by reasonable accommodation for person with psychosocial
disability?
The economy of passion and commitment?
The politics of engagement and disengagement?
The experiential understanding of support?
What is meant by support and how should support be designed so that neither the
rights of person with disability nor the rights of the supporting person stand
compromised?

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Reasonable accommodation [ In Box]

Unlike the medical model of disability, the social model does not see impairment as the
cause of disability. In the latter approach disability is caused by the interaction between
impairment and the social, physical, attitudinal, legal etc. barriers raised by an
inappropriate response to the needs of persons with disability. Consequently, in the social
model, the emphasis is not on adjusting the person with disability to the expectations and
requirements of the mainstream society. But on the contrary, the task is to adjust society
and modifications in the environment to accommodate the needs of persons with
disability. CRPD obligates the States to provide such accommodations if they do not
impose disproprtionate or undue burden. The denial of such reasonable accommodation is
discrimintation based on disability.

[Box ends]

In the case of physical disabilities it is easy to see what reasonable accommodations may
be necessary. The typical example is the use of ramps, besides stairs, to enable the
movement of wheelchair users. The provision of easy to read texts, Braille copies of
documents, access to sign language interpreters are all examples of reasonable

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accommodations that are crucial for persons with intellectual disabilty, blind people and
deaf persons respectively.

In the case of psychosocial disability, the necessary accommodations may be more


individual, though there are a number of common types identified by the small number of
studies conducted in the field. The following is not an exhausting list of such
accommodations:

well structured time with regular breaks


short sessions in meetings
flexible work hours in employment
awareness on stress reduction
trauma informed services as many people with psychosocial disabilities are trauma
survivors and the chance of retraumatization is high

One should not think that reasonable accommodation is necessary for persons with
disability only. Lifts in tall building are needed for all, sighted people need lighting
(which is not necessary for their blind colleagues).

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It is important to note that access to reasonable accommodation is good for all. Ramps
can be used not only by wheelchair users but also by parents with baby carrieges, easy to
read texts are useful for non-disabled people with lesser education, stress reduction, short
and focussed sessions at meetings are good for all involved.

9.1 The Economy of Passion and Commitment

Social contract theorists exclude persons with disabilities from the social contract as they
believed that persons with disability cannot be active contributors in social cooperation.
Needless to add, this perception of disability is held by non-disabled people. As the
decision to exclude does not affect them it is articulated in unproblematic terms. The
persons affected by the decision necessarily feel otherwise.

Martha Nussbaum16 challenges the liberal belief that mutual advantage is the only basis
for social cooperation. She holds that a just contract would not only include terms which
favour the parties to the contract; Social justice demands that the concerns of all members
of the society should find voice in the contract whether or not they participate in the
making of such contract. It is on this reasoning that she raises the justice claims of
persons with disabilities. Nussbaum makes her argument for the rights of persons with
disabilities on the strength of human neediness. Persons with disabilities she holds stand

16

Martha Nussbaum, Frontiers of Justice Disability Nationality Species Membership, Oxford Univeristy Press,
New Delhi (2006)

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excluded from the liberal vision of justice because human beings are seen as rational, free
and independent. Such a construction of the human is in denial of the animal dimension
of the human being, not because such dimension does not exist in all beings, but because
men do not engage with this neediness and hence can render it invisible.

Nussbaum does not only utilize reason to make her case on the rights of the persons with
disabilities. She also relies upon her direct encounters with the lived realities of persons
with disabilities and so refers to the aspirations and travails of her own nephew and the
children of close friends. These direct encounters cause one to ask would Nussbaum have
so foundationally challenged the liberal discourse if her experiential reality did not force
her to do so. What is the role of emotion in advocacy? And where do we situate
experience in the realm of knowledge? Unless the lived experience of people trumps
professional diagnosis, the social narratives on disability cannot be challenged.

The question for us was whether such challenge can be more effectively mounted by
persons with disabilities because it is generally believed that all persons argue with
greater fervour on those matters which directly affect them. Simultaneously, this passion
is often seen to cloud reason and discount objectivity. In the context of disability, only
persons with disabilities possess lived knowledge of the disability experience. If they
dont speak, the non-disabled perspective on disability continues to rule and if they do
speak, their testimonies are dismissed as emotional and subjective.

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At several events during the six months programme, we found passion to be a double
edged sword. Whilst passionately made intervention informed with lived experience
arrested attention and obtained listeners, the same passion was used by interveners to
discount what was said. A clinical unemotional presentation had few takers and an
emotional one could be dismissed at will. We also found that the use of passion both
energized and exhausted us. The challenge then was how to obtain attention without
entering into argument and how to ensure that passion was a resource and not a liability.
To this end, we needed to specially design techniques of engagement and disengagement,
which allowed for the cerebral use of passion.

9.2 Receiving support

While I (Gabor) was in India, I needed support at different levels, for different causes. As
a European spending time first time in Asia, not speaking any of the languages except
English, fully unfamiliar with the everyday customs and habits, I required an induction in
the beginning and a less intense but permanent practical support later. Such support
included help with shopping, transport, contact with offices of authorities. Every morning
a car came to pick me up at my house and every evening either a car or a colleague from
the Bapu office accompanied me home. On the way, my shopping errands were
completed. The various forms of this practical support came from different people from
the office, who represented a support network for me. The advantage of such a network

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was manifold: different activities require different skills (e.g shopping for clothes is
different from negotiations with the Internet provider). A larger network it is more likely
to have a person who possesses the competence for the job on hand. Also the network
ensures that support giving is not an unlimited activity for any one person. As a person
with psychosocial disability I needed emotional and moral support, especially at times of
crisis. Long chatting over troubling issues, being accompanied when travelling to and
attending stressful events, being part of a group of people with similar experiences
providing with a safe and non-violent space for being together, thinking together and
helping consider available options with likely outcomes before making decisions, are
important examples for this type of support.

The need for this latter type of support became particularly evident when I developed a
crisis after the Chennai meeting of the Indian Psychiatric Society. Till that point I had
been primarily seen as an international expert by colleagues and my vulnerabilities as a
person with disability were only intellectually recognized. In the crisis, I was unable to
see any merit in my work, I wanted to escape, though understood that I could not find a
better place. Colleagues and friends, peer users/survivors and non-disabled companions
kept asking me what support I needed. This did not help much, as I could hardly give
more concrete an answer than support to survive. In the beginning, this was not seen as
an answer that makes sense, but colleagues ensured that I always had something to eat,
they demonstrated their availability in the case of need. I understood that they were
frustrated as they felt useless and I found no ways to assure them that what I needed then
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was exactly the feeling of solidarity, of their being with me and the very practical help
with basic physical survival.

With time I understood that I had an important decision to make. I was in the middle of
my India programme, a number of events, including some stressful ones, had been
arranged. Shall I cancel my engagements? Shall I go and participate? How when life at
home was more difficult than I could cope with on my own. If I cancel, what will happen
to the entire programme, which I saw as a comlpex whole? How shall I cope with the
failure of not being capable to execute my agreed activities?

I found no way to make a decision. Thinking about the options made me too anxious to
go further and consider the expected consequences of the various options. All the options
seemed to be equally hopeless, though in different ways. I saw no way to compare them,
to prioritze. Which is better (or at least the lesser evil): giving up the programme to which
not only I but a number of colleagues had been enthusiastically committed and had
invested long hours in preparatory work? Or try and attend all the scheduled meetings,
make low quality interventions and risk an even deeper crisis? Such questions occupied
my mind but without any stable resolution.

It then occurred to me that this might be a situation where supported decision making
could help me overcome the barriers to reach a

decision on my own, without

compromising my autonomy.
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Persons with disabilities (as any other people) may find some decisions difficult or
impossible to make if support is not made available. If there is a trusted person, or a
network of such people, who know the person with disability sufficiently well, then a
shared exercise of identification of possible choices can be conducted. In such a process
each of the options can be weighed against its strengths, weaknesses, opportunities and
threats. With the emotional stress of reaching a decision being shared, the person with
disability obtains sufficient relief to be able to better judge the situation. All of us live in
mutual dependence with others. When deciding on important questions, we actively take
into consideration our relatives, our friends views and suggestions, without loosing our
ultimate right to choice. Why should it be different for persons with disability when such
an interdependent decision making scheme is absolutely necessary to reach a decision?
Why should it be different when a person with disability faces a hard to decide situation
where access to such support is crucial?

The paradigm of supported decision making holds that the person has a right to use the
support coming from trusted persons identified by him/her. The support should be
provided in an enabling way that respects the persons dignity and will and does not exert
undue influence. The use of such support does not negate the persons legal capacity.

This time a friend offered her hand. We had been working together under stressful
circumstances before, had spent times of leisure together, shared our values etc. She was
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in the best position to help me guide through the consideration of the available options,
helped design strategies to minimize damage. In that interdependent process I was
enabled to decide to cancel only one engagement and otherwise go ahead with the
originally planned schedule. As a measure of prevention, we decided to limit emotional
overengagement in stressful meetings, by reducing the time spent at the meeting to our
own session and also by reducing the interactions with potentially hostile actors.

Looking back at the various supports made available for me, I can say that there is no
such a thing as more or less important support. The adequate support, whatever small or
big it is, is the needed one. In the first stage of the crisis, I could have not done anything
with a support to reach my decision on the continuation or termination of the project. I
needed more basic level support then. When I was ready for the decision making, I
needed the co-thinking together with someone I trusted, who knew me well, could
understand my limited communication, not impose herself and be patient.

I liked the support when it came gracefully, did not diminish me, respected the difficulty
of my situation and made me stronger in the situation I was in.

9.3 The Experiential Understanding of Providing Support

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The principle of universal legal capacity and the fact of human inter-dependence both
merge together to bring into being the concept of support. Universal legal capacity is
premised on the fact that all human beings possess legal capacity and yet may require
support to exercise this legal capacity. The fact that support is needed in no way negates
the existence of legal capacity. The conceptual acceptance of this proposition only
required that the inherent equality of all human beings be recognized so as to accord the
opportunity for capability development to all.

The actual implementation of this

proposition however requires that support be in fact provided. I (Amita) have been a
major proponent of the supported decision making model of legal capacity, however, my
understanding of the concept had been more intellectual than experiential. One of my
classmates in my Masters course was a blind person. Loud reading of course materials
and helping him to track the appropriate class room was the maximum I had done in
providing support. However, the support had been provided on an adhoc basis hence
neither my colleague felt that he had a right to seek it nor did I feel that I was obliged to
provide the support.

When we invited Gabor to visit India to help us catalyze self advocacy in the country, it
was a different case scenario, the offer was made with the understanding that all of us at
Bapu Trust would provide Gabor the support that he may require to carry out a successful
India visit. It was evident that one part of the support would be just to orient him to the
country and help him understand the varied cultural codes; the other part was to ease his
entry into Bapu so that he may be perceived as a fellow traveller in mental health
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advocacy and not the alien white European. This assistance whilst important was of the
kind that we routinely extended to all foreign visitors. The fact that this foreign visitor
was also a person with disability did not seem overly critical at this point.

Insofar as I was also coordinating Gabors academic programme, I did need to be in


continuous consultation with him on which engagement was in consonance with the
overarching objective of the visit and what invitation was better avoided. It could be said
that we supported him in arriving at these decisions by providing him information on the
various individuals and institutions who wished to be associated with him. Again this
assistance was in no way unique, it is generally extended to any visiting colleague in
order to obtain optimal benefit of the visit.

For us in India, foreign visitors who wish to be escorted around is a common request,
which is generally conceded. In Gabors case, the request was emanating from his
disability, or rather the unfamiliarity of the environment coupled with his disability. The
other visitors seek such support only on the strength of unfamiliarity.

We had invited Gabor to India as a self advocate who had done trail blazing work in the
field of disability rights. The invitation itself made it evident that he was a person with
disability and yet it was his expertise and not his disability which totally engrossed us
whilst planning his programme as well as organizing his support. How should the
support change in tone and colour if the disability kicks in, was a matter we did not really
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consider. For me personally, the total denial of the experiential expertise possessed by
persons with disability was the most common discrimination practiced against them. I
felt that in asserting the expertise and making space for its expression was the only
support that Gabor required from me, as a person without disability. To use the equality
language I felt that non discrimination required that a person with disability should be
treated the same as all others. Whilst the value of sameness of treatment could not be
denied such treatment could in certain situations reinforce rather than challenge
discrimination. Thus, the first realization for me in providing support was the necessity
of giving both same and different. Whilst disability could not be a basis for denying
persons with disabilities equal opportunity, a neglect of the disability prompted needs
could be equally discriminatory.

The reasonable accommodation of the disability

promoted needs was thus an integral part of giving support. What should be the nature of
this different became the most crucial part of my experiential learning in giving support.

One of the early learnings was that the anxiety prompted by the disability should not
result in displacing the decision making choices of the person with disability. Thus, after
the IPS programme whether Gabor should go back to Hungary; or cancel all his speaking
engagements outside Pune or continue with as much of the original programme as
possible. This was a decision we had to reach with Gabor as he was feeling overwhelmed
by his disability and hence finding it difficult to weigh the pros and cons of each of the
above choices. Support mandated that he should be firstly familiarized with the choices
and then informed of the feasibility of each option.
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My second learning was the necessity of providing time to process. A sudden change of
programme, a modification of a speaking strategy without consultation triggered
disharmony and discontent. On first encountering such discontent, my initial reaction
was that irrespective of audience needs I would not change a settled programme or
speaking sequence. Such a reaction I was told, was not accommodating the disability but
foregrounding it. Reasonable accommodation would be to consult with him before
announcing the change or to prepare him of the possibilities of change, even as the
programme was being finalized.

The third learning was to pick up signals of impending dysfunction, instead of fire
fighting after it has occurred. When Gabor was planning his trip back to Hungary, he
was very apprehensive about his luggage being above the airlines prescriptions and kept
warning me that any interrogation by the airlines would destabilize him. I did do a rough
ready check of the luggage and felt he was a couple of kilos above the accepted limit
which should not be a problem. However a weighing in at the airlines counter found
things to be otherwise and the interrogation so displaced Gabor that he became querulous,
a reaction which did not help negotiations with the airlines staff.

As the airlines people were only rendering him dysfunctional I did go inside the airport
and we did the best we could in the circumstances. However, we both felt that the result

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could well have been different if Gabor had obtained my support before his anxiety set in
than afterwards.

Support is not a one way process. The fact that we had started out with me as the support
person was no reason why things should perpetually remain so. By being part of a
support network I had the right to both demand and provide support. Moreover just as I
had not to ride roughshod over the preferences of the supported person, I had not to
become an appendage of the supported person. As a supporting person I had a right to
protest every time this happened. My failing to protest would as much as my failing to
consult, breach the ethic of a supporting relationship. Support I learnt is about helping
each other grow; so if mutual growth is not happening then the relationship is not a
supporting one. In fact when any person in the support team starts feeling used and
stifled, then it is time to halt and consider what is going wrong. Since the identity of
supporting and supported person keep altering, I learnt that the praxis of support is to
learn to lend a hand for the justice of all.

10

Is Advocacy only Self Advocacy?

The relationship between non-disabled disability advocates and self advocates was
one of the crucial issues that we were continually required to address while
carrying out this programme.

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Should disabled persons have exclusive voice or determinative voice? Or should


an active effort at collaboration and partnership17 be made?

Will such partnership necessarily be disadvantageous to persons with disability?


Will claims of exclusivity kill social solidarity? Does a chip on shoulder help the
cause or oust the claims of persons with disability?
How to reconcile the spaces provided by exception making with the claims of
justice of person with disabilities?

10.1 Who Should Advocate for Disability Rights?

17

Partnership presumes that there is a shared goal and shared strategy on how to achieve it
between the self-advocates and their non-disabled colleagues. Partnership shall be based on
substantive equality and shall never be imposed on any of the parties. Working with partners is
essential for self-advocates if their goal is to advocate for a more just society. The burden of
change shall not be on the self-advocates shoulder. Furthermore, if only self-advocates work on
the desired social changes, their struggle will remain marginal and isolated. Non-disabled
advocates can mainstream the struggle into their social sectors and can create entry points for
self-advocates.
Partnership presumes mutual respect. Nevertheless substantive equality cannot be achieved only
through respect and formal equality. Self-advocates come from a stereotyped and
disenfrenchised position. Empowerment, support and reasonable accommodation shall be
integral components in the partnership relation.
Empowerment can hardly happen if the leadership within the partnership is owned by the nondisabled advocates. And in the current power dynamic a formal sharing of tasks could once again
marginalize the self advocate. It is therefore suggested that at this stage of the disability rights
movement the agenda setting, strategy planning, assesment should be necessarily led by the selfadvocates.
Partnership shall always utilize the strenghts of both parties.

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It has been the experience of all vulnerable groups that the first articulation for their
cause has been undertaken by those who do not belong to the group. For example, a
number of liberal men were the first exponents of womens rights; Free men spoke
against slavery, and white people against apartheid. It has also been found that when
advocacy of rights is undertaken by persons other than the oppressed members, then the
charter of demands are usually less ambitious and more conciliatory in content. Further,
since the liberal advocate has not experienced the oppression of exclusion, the demands
are only intellectually informed, they lack the emotion of experience. The cause of the
oppressed group is generally inaugurated by the liberal advocate. However, to obtain its
just due the oppressed group has to break rank with the liberal advocate. What should the
relationship be between the oppressed group and non oppressed advocates of their rights?
Should the latter drop out of the rights crusade after inaugurating it? Or should members
of the oppressed group and non oppressed liberal advocates work in solidarity? Is such
solidarity possible? Or will the liberal advocates inadvertently or otherwise recreate the
hierarchy they are challenging?

The above mentioned questions would be of relevance in the context of any oppressed
group; however, additional dimensions come into play when raised in the context of
persons with disabilities. The cause of disability rights was first espoused by the families
and parents of persons with disabilities or by professionals working in their field. Whilst
both groups were concerned with obtaining a fair deal from state and society for persons
with disabilities, neither families nor professionals foundationally challenged the
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medicalized social perception of disability. Further, whilst the outcome of the bargain
may have some bearing on the wellbeing of families, it had little impact on the personal
development of professionals. In fact to a greater or lesser extent, both families and
professionals prevented the voice of persons with disabilities from being heard. In this
situation, if persons with disabilities wish to espouse their own cause, they would need to
fight for the right to do so, not just from state and society, but also from their erstwhile
well wishers that is professionals and families. The difficulty of the situation can be
appreciated, if it is understood that it is always more difficult to interrogate and challenge
those who are ostensibly with us, than those who are clearly against us.

The terrain of disability rights is further complicated by persons who advocate for
disability rights possibly with the same intensity as persons with disabilities;, but do not
have the identity of a person with disability, and hence do not face the everyday
experiential impairments that may confront a person with disability. What should be the
role of such non-disabled exponents of disability rights in the disability rights movement?
How should the disability rights movement and the individual person with disability deal
with such non-disabled liberal exponents? Are relationships of solidarity possible? Can
such like individuals assist the process of inclusion of disability rights in mainstream
discourse? Or will their presence allow for covert oppression by yet again privileging the
non-disabled participant in the disability rights movement?

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10.2 The Non Disabled Disability Advocate

When Gabor and I decided to write this report on self advocacy using his six months
sojourn in India as case study we did not really dwell on my role (Amita) and identity in
this exercise. It was a report on self advocacy, so logically Gabor Gombos identity
seemed to be critical to the enterprise. However, as we started to work on the report and
faced up to the very many dilemmas we had encountered in the six month period, I was
forced to look inwards and reflect upon my own identity. Who am I? What is my concern
with the rights of persons with psycho-social disabilities? Is it only an academic interest
-- an expertise I have acquired through long years of study or are there lived realities
feeding my concern? This reflection is a difficult one to undertake in the public domain.
However, a range of contemporary developments as also the integrity with which we are
attempting to write this report has made it imperative that I undertake this exercise
despite its evident difficulty.

Whilst pursuing my Bachelor degree in law I went through an emotionally traumatic


period, to deal with which, I partook of psychotropic medication, even though I did not
formally seek help from psychiatry. With the resolution of the emotional dilemma, I was
able to emerge out of the breakdown situation and also discontinue the medication. The
episode had its share of bad behaviour, delusional conduct and irrational violence, but
whether because of the medication, or because of an extremely supportive family

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environment, or some deep self reflection, or a combination of all the three, I came out of
the episode. Fear, trauma, and loss of confidence were the immediate consequences of the
experience; a change of metabolism resulting in a lifelong battle with weight was the long
term effect. However the episode was for me just that, an episode, which caused trauma
and produced some lifelong consequences, but it did not, for whatever fortuitous reason,
define my identity either for me or for my family.

As a part of the masters programme in law at the University of Delhi, we are required to
undertake a dissertation on any issue of our choice. The search for a research worthy
issue was amongst the anxiety ridden tasks of the programme. In the course of my
struggles, a close friend suggested that why dont I obtain inspiration from personal
experience and choose to work on the laws relating to persons with mental illness. I saw
merit in the suggestion and undertook my Masters research on the Power Procedure and
Effect of Involuntary Commitment to Mental Hospitals. My choice was dictated by the
fact that the most explicit legal regulation of persons with mental illness happened in the
realm of their treatment and there was legislation regulating such treatment on the statute
book i.e. Indian Lunacy Act of 1912. Also at the same time, a legislative proposal to
replace this colonial legislation was being deliberated upon in the Indian Parliament.
These two legislative efforts provided sufficient material to guide my first research effort
in the area. As I look back at that first research exercise I see it being very dominantly
guided by American civil libertarian perspectives and highly suspicious of therapeutic
justifications for denial of liberty. Yet it did not ask for the ouster of involuntary
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commitment. I was at that stage content with seeking rigourous implementation of fair
process safeguards and believed that such safeguards will take care of any misuse of the
power.

The research effort which I initiated with my masters in law continued with my doctoral
thesis where I expanded my scope of study to critically examine all the laws relating to
persons with mental illness. My study showed how mental disorder resulted in the loss of
civil status for persons living with mental illness and how the law was primarily oriented
towards managing the social dysfunction which happened due to mental disorder,
protecting the rights of persons living with mental illness is not the concern of the law.
Thus whilst I problematised the disqualifying legal regime and concluded that it
significantly reinforced social stigma and sought a rights consonant law, I did not go so
far as to ask for a total ouster of compulsory commitment and the disqualifying legal
regime.

As already recounted, my interest in this field was prompted by personal experience, and
whilst this experience has subliminally fed my work it has never been part of my publicly
declared interest, primarily because the experience informed my personality but did not
constitute my identity. Also I did at that time believe that my experience was not
representative and my escape from it happened due to the distinct nature of my
experience. In the years to come, I met a number of persons whose encounter with mental
disorder happened in no different circumstances than mine and yet whose lives have been
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totally altered by the experience. The different consequence in my own case has brought
home to me how easy it was to both live and avoid the career of a mental patient. I found
the testimonies and reasoning of persons with disabilities powerfully persuasive. It is
these meetings with other colleagues and listening in to their experiences which got me to
cross the Rubicon and follow on the logical consequence of my own research and seek
for the adoption of universal legal capacity and the prohibition of forced psychiatric
interventions. Without discounting the value of my research efforts, I need to admit that it
was not my research but the large presence of persons with disabilities, their passion and
their honest personal narratives which led to the acceptance of a number of forward
looking principles in the CRPD.

Both during the negotiations of the CRPD, and in the activities required for its
implementation and monitoring, the role of persons with disabilities has been privileged.
Such privileging I think is required if the exclusion that persons with disabilities have
experienced is to be neutralized and compensated. In such a scenario, especially in usersurvivor meetings I have been asked if I am a survivor. There a number of probing
questions on whether or not I have had what could be termed a psychiatric experience.
My answer to the first question remains a constant negative; but the answer to the second
question varies depending upon my comfort level with the person asking the question. I
have never publicized my psychiatric experience and I find it ethically questionable to do
so now especially in forums where it has obtained some political currency. I am talking

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about it in this report because the reflexivity with which this report is being written
demands it.

Further whilst I do think that a human rights consonant legal regimes cannot be
constructed without the knowledge and experience of self advocates, I at the same time
also believe that the work and solidarity of significant others like me is also required if
the rights of persons with psychosocial disabilities are to be socially guaranteed. Thus
whilst I consider self advocacy essential, I also consider non-disabled advocacy to be
necessary. What should be the inter se relationship of the two kinds of advocates? How
can they complement each other? If the CRPD recognizes universal legal capacity, it also
recognizes support; Does this dual recognition not mandate that persons other than
persons with disabilities should advocate for the human rights of persons with
disabilities? So then what kind of a role do I see for an advocate like me, which is
different from self advocates? These are some of the questions which I had to face up to
during the CRPD negotiations and the various engagements on which Gabor and I
worked together during his six month India visit. We have deliberated upon some of
these issues in the earlier segments of the report. This experiential elaboration has been
included as I do believe that the solidarity of non-disabled disability advocates needs to
join in with self advocacy for persons living with psychosocial disabilities to obtain their
just due.

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11

CONCLUSIONS

This report has primarily utilized the visit of Gabor Gombos as a case study to reflect on
the issue of self advocacy, the spaces it needs to encompass; the dilemmas it throws up;
the pitfalls it is confronted with; and the resources it requires to succeed.

11.1 Spaces for Self Advocacy

One of the major learnings of this report has been that the advocacy for rights of persons
with psychosocial disabilities cannot be limited in space. We should not accept any
limitation of space because if we do we will focus our attention on those who are already
engaged with psychosocial disabilities, be they family, friends or professionals. This
segmented approach reinforces the exclusion of persons with psychosocial disabilities,
because it holds out that people will be interested in engaging with psychosocial
disability only if they are directly affected by it.

G.G.Prabhu18 in a pioneering study on social attitudes towards persons living with mental
illness found families of persons living with mental illness harboured a more prejudicial
outlook towards mental illness than society at large. This lesser social prejudice can be
18

G.G.Prabhu, A Comparative Study of Orientation towards Mental Illness, Ph.D Thesis, All India Institute of
Medical Sciences, New Delhi (1975)

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employed to obtain entry for persons with psychosocial disabilities. The presence of
persons with psychosocial disabilities in public forums does not just counteract social
prejudice but also allows the family to stop stalling the social participation of persons
with psychosocial disabilities. We found that when questions on the discrimination
against persons with psychosocial disability was raised in general forums, many a
participant who was engaging with the question only in specialized forums felt
empowered by the silence being broken.

11.2 Strategies to Offset the Disadvantages of the Multi-Sectoral


Approach to Self Advocacy

Our work also demonstrated to us that the adoption of the multi-sectored approach can
render the impact of advocacy very diffuse. In order to undertake focused advocacy work
it is important that the efforts of the self advocate should be supported by a team which
carries out the necessary follow up work be it of disseminating of information to the
media or to set up the follow up meetings or carry out the attendant research.

11.2.1 Dilemmas of Self Advocacy

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Self advocacy is about putting one self on the line. To that end, it is a do or die game.
When it succeeds, the gains are to the entire movement, but when it fails the costs are
paid largely by the individual self advocate. How much should an individual person be
asked to contribute to the cause? How do we balance the benefits to the movement with
the costs to the individual?

Alliance building was one strategy which recommended

itself in the working of this project. These alliances need to be with other excluded
populations who have experienced exclusion but are not as disadvantaged in social
interaction as persons with psychosocial disabilities. Consequently, such other persons
can be spokespersons for persons with psychosocial disabilities as and when required.
This horizontal representation allows respite from mandatory advocacy to persons with
psychosocial disabilities without silencing their authentic concerns.

Further alliance building allows the concerns of persons with psychosocial disabilities to
be voiced at varied forums and just this articulation helps in challenging the excluded life
situation of persons with psychosocial disabilities.

11.2.2 Pitfalls to Self Advocacy

Other than social stigma, the attribution of legal incapacity to persons with psychosocial
disabilities is amongst the major pitfalls to self advocacy.

The law presumes persons

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with psychosocial disabilities to be incapable of conducting their own affairs. It therefore


provides for procedures by which the management of their affairs can be undertaken by
others. The power to initiate this process of substitution has been conferred on the
friends and family of persons with psychosocial disabilities. It is significant to note that
in this model, persons with psychosocial disabilities are not seeking assistance but the
same is being thrust upon them. Thus any person living with psychosocial disability who
makes a public disclosure of his condition renders himself vulnerable to such mandatory
help providing procedures. It is not necessary that the initiation of the procedure may in
fact result in the loss of legal status for the persons with psychosocial disability. However
the fear of such like processes and the accompanying loss of social status prevents many
a person with psychosocial disability to self advocate for the cause.

Goffman19 distinguishes between the discreditable and the discredited in persons living
with mental illness. Susan Stefan20 points out that the rights of persons with psychosocial
disabilities will not obtain social recognition unless the discreditable members of the
community take up the cause. The absence of legal capacity is one of the major
impediments faced by the discreditable members in taking up the cause. The UN CRPD
has recognized the full legal capacity of all persons with disabilities. The definition of
disability incorporated in Article 2 of the Convention includes persons living with mental
illness. Consequently the regime of universal legal capacity constructed by the CRPD
19

E.Goffman Stigma : Notes on the Management of Spoiled Identity (1963)


Susan Stefan Discredited and Discreditable: The Search for Political Identity by People with Psychiatric
Diagnosis 44 William and Mary Law Review 1341 (2003)
20

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extends to persons with psychosocial disabilities. State parties shall need to dismantle the
disqualifying legal regimes against persons with psychosocial disabilities, if they
correctly implement the requirements of Article 12 of CRPD. However, till the mandate
of Article 12 is fulfilled the absence of legal capacity remains one of the major pitfalls to
self advocacy by persons with psychosocial disabilities. The irony is that legal capacity
is required to allow for self advocacy and self advocacy is needed to obtain legal
capacity.

11.2.3 Resources for Self Advocacy

Mary O Hagan21 in her study of Mental Health advocacy points out that it is unrealistic to
have a person with disability to be an unpaid advocate for the cause of disability rights.
Persons with disability are already socially disadvantaged by reason of their impairment,
to ask them to then create social space for disability rights without payment is also to
render them economically disadvantaged. And yet such like expectations are routinely
entertained from persons with disability. If persons with disabilities fulfill this
expectation they are economically deprived and if they refuse to do so they are
psychologically oppressed.

If self advocacy and self advocates is to be seriously

promoted then it is necessary that persons with disability who take up this task for the
disability community are appropriately paid for their efforts.

21

Mary O Hagan Stopovers On My Way Home From Mars Survivors Speak out (1993)

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The suggestions we make in the concluding part of this report are only illustrative. We
hope that more such suggestions will be offered when this report is read by others be they
proponents or opponents of self-advocacy. It is with this hope that we share our
experimental effort at catalyzing self-advocacy in India.

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