Inclusion in Global Grass-roots
Movements of Person with
Psychosocial Disabilities

Kasumi ITO(Graduate student of the Ritsumeikan University,
research fellow of the Japan Society for the Promotion of Science)Self-introduction◆name: Kasumi ITO（伊東香純）◆email: itokasumi24@gmail.com◆website: http://www.arsvi.com/w/ik17.htm◆research theme:
global grass-roots movements of persons withpsychosocial disabilities◆Why I study this theme?
I felt that conditions at the Japanese mental healthhospital where I went as a trainee of therapist wereawful, and became interested in the opinions of“patients” on those conditions.

Previous studies
Previous studies on grassroots movements of persons
with psychosocial disabilities...
◆mainly focus on movements in the USA and the UK,and◆have analyzed these movements as protests against
mental health system.

Actual situations◆Persons with psychosocial disabilities have developed
global grassroots solidarity, despite they are in varioussituations and have various opinions.
◆This solidarity cannot be fully explained through ananalysis of the relationship to mental health system.

Purpose
The purpose of this presentation is to describe how
persons with psychosocial disabilities have tried to maketheir global movements inclusive.

Subjects◆Global network:
World Network of Users and Survivors of Psychiatry(WNUSP)◆Continental network in Europe:
European Network of Users and Survivors of Psychiatry(ENUSP)◆The member of WNUSP and ENUSP must be anorganization or individual of user or survivor ofpsychiatry, which is anyone who defines themselves asa person who has experienced madness and/or mental
health problems and/or has used or survived
psychiatry/mental health services.

Processes focused on
GlobalEuropeanEstablished in 1991
in 1991
with the name,with the name,“World Federation for “European Network
Psychiatric Users.”of Users and ExUsers in MentalHealth.”
in 1997
in 1997
Changedits name
to “World Network of to “European
Network of (Ex-)
Users andUsers andSurvivors ofSurvivors ofPsychiatry”
Psychiatry”

Methods◆I interviewed persons who led the processes.
*Mary O’Hagan (from New Zealand), who
was the first chair of the WNUSP; and*Maths Jesperson (from Sweden), who
edited newsletters for both organizations.
◆I evaluated documents of the both and other relatedorganizations.

Pre-history in the USA◆Movements of persons with psychosocial disabilities in
the USA started with mental health professionals who
were not satisfied with the practices in mental hospitals.
◆Then, survivors made organizations of only
themselves in 1970s, influenced by the civil rightsmovements.
◆The federal government introduced the Community
Support Program in 1977 and financially supported themovements. Then, the radical survivor stance wasmuted and moved to the background, while thereformist consumer position gained strength andrecognition. Oppositions in the movements became
clear in 1980s.

Pre-history in the UK◆Movements of persons with psychosocial disabilities in
the UK also started with mental health professionals
who were not satisfied with the practices in mentalhospitals.
◆Persons with psychosocial disabilities established theirown independent organization in 1980s, influenced by
the movements in other countries, especially in the USA
and the Netherlands.

Establishment of the WNUSP◆The World Federation for Mental Health (WFMH) is amixed organization of mental health professionals,
persons with psychosocial disabilities, their relatives andothers, and has been led by psychiatrists.
◆Persons with psychosocial disabilities who participatedin the WFMH thought that the WFMH failed to represent
their opinions.
◆They held separate meetings at the WFMH World
Congress in 1991, and established the WNUSP at thattime.

After establishment◆Some members complained about the name, World
Federation for Psychiatric Users, because they did not
identify themselves as users.
◆O’Hagan said about the name as follows;* The problem with the word ‘federation’ was that itconnected us to the WFMH.
* The users tend to represent the more moderate
people and the survivors represent the more radicalpeople.

Change the name into WNUSP◆The WNUSP continued the discussion about theirname in correspondence and newsletters.
◆The WNUSP adopted a position paper at the Fourth
General Assembly in 1995 which noted that there were
varying opinions among the movements on how todefine an individual who had experienced the mental
health system; they decided to use “user/survivor” forconciseness.
◆ The WNUSP members held the Fifth General
Assembly in Lahti, Finland, in August 1997, andchanged the name at that time.

Establishment of the ENUSP◆There were comparatively radical reforms of themental health system in Italy from the 1970s. The
reforms became world-famous, and established Italy as
an important meeting place for those interested in themental health movement.
◆The movements in the Netherlands and the UK led toa 1991 meeting in Zandvoort, Netherlands, with the aimof establishing a continental network.
◆ There were difficult discussions about medicaltreatment at the meeting; nonetheless participants
eventually agreed to establish the European network.

2nd general assembly in Europe◆The Second General Assembly of the ENUSP was held
in Elsinore, Denmark, in 1994.
◆Participants from Germany submitted a proposal tochange the name to the “European Network of Users
and Survivors of Psychiatry.” They had gathered 25signatures.
◆The majority voted against this proposal; therefore it
was not accepted.

Seminar on self-understanding◆There were intense discussions on the name at theSecond General Assembly of the ENUSP. Consequently, aseminar was held on self-understanding in 1994.
◆There were four topics discussed:* Self understanding:
Are we different from average citizens? If so, why?
* Self definition:
How do we define ourselves without using traditional
psychiatric or disability terms?
* Self determination:
How do we achieve self-determination in our own
social surroundings?
* Special rights or just equality?
Should we demand special social rights?

Discussion at the seminar◆Many participants referred to their experiences ofbeing defined by others against intention of themselves.
◆They did not attempt to unify their identities, andsome participants said that they did not want to bedefined by others.
◆It seemed more important to include various opinionsof many members than to have one unified opinion.

Change the name into ENUSP◆The European network held the Third General
Assembly in Reading, the UK in January, 1997. The
name change went smoothly.
◆Jesperson described the atmosphere of thediscussion: “There was no call at all. It was immediate,oh, we changed the name, everybody agreed.”◆Then, point of discussion moved from the name torelationship with disability movements.

Discussion◆From the beginning, both organizations included
members with opposing opinions.
◆After the establishment, it became more clear thatunifying identification of members who have different
opinions is difficult.
◆They intended to make sure that every member could
feel to be part of the WNUSP or ENUSP, instead of split
based on opinion.

Conclusion◆Both the WNUSP and ENUSP changed their names, inorder to make it clear that members have different
opinions.
◆Therefore, it can be said that main basis of theirsolidarity is not similarity of insistence on how mental
health system should be changed.
◆Persons with psychosocial disabilities had intention to
make their organization inclusive for people withdifferent opinions.

Future issues◆The WNUSP and ENUSP do not try to include all
people as their member. Their member must be only
individuals or organizations of (ex-)users and survivorsof psychiatry.
◆What is the main basis of their solidarity in manydifferences?
◆I think it may be experiences that what they think,demand, or experience have been denied by others,
because they avoided to force one identification on allmembers.
◆More survey is needed to reveal it.

Thank you so muchfor your kind attention.

Kasumi ITO
Email: itokasumi24@gmail.com
Website: http://www.arsvi.com/w/ik17.htm