Empowerment Booklet

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CBR GuidelinesCommunity-Based Rehabilitation

Empowerment component


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WHO Library Cataloguing-in-Publication Data

Community-based rehabilitation: CBR guidelines.

1.Rehabilitation. 2.Disabled persons. 3.Community health services. 4.ealth policy. 5.uman rights.

6.Social justice. 7.Consumer participation. 8.Guidelines. I.World ealth Organization. II.UNSCO.

III.International abour Organisation. I.International Disability Development Consortium.

ISBN 978 92 4 154805 2 (N classification: WB 320)

World Health Organization 2010

ll rights reserved. Publications of the World ealth Organization can be obtained from WO Press,

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translate WO publications whether for sale or for noncommercial distribution should be

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The designations employed and the presentation of the material in this publication do not

imply the expression of any opinion whatsoever on the part of the World ealth Organization

concerning the legal status of any country, territory, city or area or of its authorities, or concerning

the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border

lines for which there may not yet be full agreement.

The mention of specific companies or of certain manufacturers products does not imply that

they are endorsed or recommended by the World ealth Organization in preference to others of

a similar nature that are not mentioned. rrors and omissions excepted, the names of proprietary

products are distinguished by initial capital letters.

ll reasonable precautions have been taken by the World ealth Organization to verify the

information contained in this publication. owever, the published material is being distributed

without warranty of any kind, either expressed or implied. The responsibility for the interpretation

and use of the material lies with the reader. In no event shall the World ealth Organization be

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PRB 1

Preamble

Empowerment is the fnal component o the community-based rehabilitation (CBR)

matrix and is a cross-cutting theme While the frst our components o the matrix relate

to key development sectors (ie health, education, livelihood, and social sectors), the

empowerment component ocuses on the importance o empowering people with

disabilities, their amily members and communities to acilitate the mainstreaming o

disability across each sector and to ensure that everybody is able to access their rights

and entitlements

The word empowerment has dierent meanings in dierent contexts and is not easily

translated into all languages (1) Simple descriptions o empowerment include: having

a say and being listened to, sel-power, own decision-making, having control or gaining

urther control, being ree, independence, being capable o fghting or ones rights, and

being recognized and respected as equal citizens and human beings with a contribu-

tion to make (1,2)

Many CBR programmes have ocused on the medical model, ie on the provision o reha-

bilitation to people with disabilities without asking or anything in return While this has

resulted in positive changes or many people with disabilities, it has also promoted a

dependency model a mindset o giver and receiver Empowerment begins to happen

when individuals or groups o people recognize that they can change their situation, and

begin to do so It is a process that involves things like awareness and capacity-building

leading to greater participation, to greater decision-making power and control, and to

action or change (2)

People with disabilities, their amily members and communities are central to CBR These

guidelines encourage and promote a move away rom the traditional model o CBR to

a community-based inclusive development model The starting point o any CBR pro-

gramme should be to acilitate the empowerment o disabled people and their amilies

and communities

as this will lead toachievement o

goals, outcomes

and sustainability


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2 CBR GUIDINS > 6: POWRNT COPONNT

BOX 1

The Malawi Council or the Handicapped (MACOHA), a subsidiary o the Ministry or Persons

with Disabilities and the Elderly (MPWDE), is responsible or implementing the national CBR

programme in Malawi MACOHA works in partnership with other ministries, eg those o

health, education, fnance, economic planning, gender, child development and community

development, and also with the Federation o Disability Organisations in Malawi

(FEDOMA), Christoel Blinden Mission (CBM), Sight Savers international, and the Norwegian

Association o the Disabled

The drat CBR guidelines provided the main ramework or developing the national CBR

programme, along with the Convention on the Rights o Persons with Disabilities andthe mandate o the Arican Decade or Persons with Disabilities The government o

Malawi has endorsed CBR as the preerred approach or reaching people with disabilities

across the country MACOHA is directly responsible or implementing the health,

education, and livelihood components o the CBR matrix, while it works with FEDOMA

and other nongovernmental organizations, government ministries and disabled peoples

organizations to implement the social and empowerment components o the matrix

MACOHA, FEDOMA and partners work directly with people with disabilities at the district

and subdistrict levels to empower them Empowerment begins with a community

awareness programme, mobilization o the community, and the organization o disabledpeople and ormation o a disabled peoples committee Representatives o the committee

then attend a training workshop to gain greater understanding o the concepts o CBR

and mainstreaming, enabling them to negotiate with local authorities and access the

benefts o development initiatives Thus people with disabilities are enabled to access

health, education and livelihood opportunities; they are becoming visible, vocal and

active, so promoting their participation and equal opportunities, and enhancing their

sel-confdence

A recent evaluation by the Norwegian Association o the Disabled indicated that while

MACOHA works on all fve components o the CBR matrix, its

main ocus and starting point is

Empowerment o people with

disabilities, especially political and

economic empowerment The

evaluation ound the Malawi CBR

programme to be eective and useul

because it brings together dierent

ministries, nongovernmental organizations

and disabled peoples organizations

Visible, vocal and active


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PRB 3

Goal

People with disabilities and their amily members make their own decisions and take

responsibility or changing their lives and improving their communities

The role of CBR

The role o CBR is to contribute to the empowerment process by promoting, support-

ing and acilitating the active involvement o people with disabilities and their amilies

in issues that aect their lives

Desirable outcomes People with disabilities are able to make inormed choices and decisions People with disabilities are active participants and contributors in their amilies and

communities

Barriers in the community are removed and people with disabilities are accepted aspeople with potential

People with disabilities and their amilies are able to access development benefts andservices in their communities

People with disabilities and their amily members come together, orm their owngroups and organizations, and work towards addressing their common problems

Key concepts

Disempowerment

Many people with disabilities experience disempowerment both in the amily and the

community They are oten strongly supported by their amilies however they may also

be over-protected whereby amily members do most things or them, and they may berejected and excluded rom community lie because o stigma and discrimination This

means that people with disabilities have very limited opportunities and choices; they

become victims and objects o pity, not agents able to make a dierence The negative

attitudes and low expectations lead people with disabilities to eel disempowered to

eel unable to do anything or to change their own lives, to eel worthless and incapable,

and to have low sel-image and low sel-esteem It is this experience o disempowerment

that starts the search or empowerment


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Empowerment and motivation

Empowerment is a complex process; it is not something that happens immediately, or

that can be given to someone (2) Change must start with people with disabilities shiting

their mindset rom being passive receivers to active contributors This shit in thinkingis important or overcoming the attitudinal, institutional and physical barriers that may

be present in the community CBR programmes can acilitate this process by eg rais-

ing awareness, providing inormation, building capacity, and encouraging participation,

which can lead to greater control and decision-making All these components are men-

tioned throughout these CBR guidelines

Awareness

Awareness is the level o understanding that individuals have o themselves, their situ-

ation and the society in which they live Raising awareness assists people to recognize

that there are opportunities or change (3) Raising awareness in amilies and communi-

ties about disability issues and human rights can also help to remove barriers or people

with disabilities so they have greater reedom or participation and decision-making

Information

Inormation is power, and one o the key activities o CBR programmes is to dissemi-

nate inormation The poorer the people, the less access they have to basic inormation

about their rights/entitlements; providing inormation ensures that people are better

equipped to take advantage o opportunities, to access services, exercise their rights,

negotiate eectively, and hold duty-bearers accountable It is impossible or people with

disabilities to take eective action and bring about change unless they have inormation

that is relevant, timely and presented in orms that they can understand (1)

Capacity-building

People with disabilities need a range o skills and knowledge to enable them to partici-

pate and contribute meaningully to their amilies and communities Gaining skills and

knowledge can lead to increased confdence and sel-esteem, which is an importantpart o the empowerment process

Peer support

Many people with disabilities eel they are the only ones acing a particular problem,

but when they meet people with similar problems they may fnd that their problems are

shared and that there are common solutions Being together helps to minimize isolation

and to increase mutual support (see Sel-help groups and Disabled peoples organiza-

tions, below)


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PRB 5

Participation

Being a contributor brings social recognition and is important in the empowerment pro-

cess People with disabilities can participate and make positive contributions at many

dierent levels For example, at a household level they can participate in activities suchas caring or amily members, herding animals, etching water, cooking, cleaning; at a

community level they can provide peer support to people who have recently experi-

enced disability and participate as members o a group or organization

Alliances and partnerships

Because their numbers are limited, people with disabilities

orm alliances and partnerships with others who are working

towards the same goals o inclusion and development Inclu-

sion works well when other groups are involved too withcollective action there is greater community ownership

BOX 2

Myla is rom the Philippines and was born with spina bifda As a young girl she ound it

dicult to cope with the impact o her impairments on her lie She says My sel-esteem

and sel-confdence were very low I always used to ask why me? and even thought about

committing suicide As time went by I learnt to live with my impairments and make use

o my abilities With the assistance o the CBR programme and a scholarship rom Simon

o Cyrene, I fnished high school and an accounting course (in 007) Then I did a training

course on sel-enhancement and leadership Since then my lie has changed I am the core

leader o the Albay chapter o disabled peoples organizations My sel-confdence and

changed way o thinking allowed me to ace the reality o my disability I am now out o my

shell and work to motivate others by setting an example The frst great git we can bestow

to others is a good example disability is not a hindrance in reaching ones goal

Myla sets a good example

Elements in this component

Advocacy and communication

This element is about sel-advocacy, which means people with disabilities speaking out

or themselves, and also communication, ie the way messages are sent and received,

which is important or sel-advocacy Both should be considered when acilitating theempowerment o people with disabilities they connect disabled people to their amilies

and communities, giving them the power to make choices, express opinions and make


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decisions which in turn builds their confdence and sel-esteem CBR programmes play a

key role in working with people with disabilities to improve their ability to communicate

and engage with others, ultimately leading to their gaining the ability to sel-advocate

Community mobilization

Community participation is critical to the success o CBR programmes, and community

mobilization is a strategy which aims to engage community members and empower

them or change and action The strategy is oten used in low-income countries to

address community development problems, and can be used by CBR programmes to

ensure that communities are empowered to address the needs o people with disabili-

ties and their amily members

Political participation

Promoting the participation o people with disabilities in politics is an important

approach to empowerment Decision-making is central to politics, so political partici-

pation enables people aected by issues to be at the centre o decision-making and to

inuence change There are many dierent ways in which people can participate in poli-

tics, including ormal participation (eg national and local party politics) and inormal

participation (eg political discussions with riends and amily) This element explores

practical ways o ensuring people with disabilities and their amilies are able to inuence

decision-making and attain equal rights and opportunities

Self-help groups

Sel-help groups are inormal groups where people come together to pursue a range o

activities and resolve common problems CBR programmes need to ocus their activities

beyond the individual, on encouraging people with disabilities and their amilies to orm,

join and participate in sel-help groups Participating in sel-help groups can improve the

visibility o people with disabilities within their communities, provide them with mutual

support, encourage them to share resources and fnd solutions together, and improvetheir confdence and sel-esteem It is through sel-help groups that CBR can achieve

some o its goals and acilitate the process o empowerment This element ocuses on

how CBR programmes can support and acilitate the ormation o sel-help groups


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PRB

Disabled peoples organizations

Just as workers come together

in many parts o the world to

promote and protect theirinterests at work, people with

disabilities also come together

to orm disabled peoples

organizations to promote and

protect their interests Disa-

bled peoples organizations

exist at the regional, national

and international level, usu-

ally have a ormal structure,

and engage in a wide range o activities including advocacy and representation Sup-

porting these organizations is one way to promote the empowerment o people with

disabilities In communities where CBR programmes and disabled peoples organizations

coexist, they need to work together Where disabled peoples organizations do not exist,

CBR programmes are encouraged to support their ormation at the community level;

this element covers how they can do this eectively


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DOCC ND COUNICTION 9

Advocacy and

communication

Introduction

Advocacy has been mentioned as a suggested activity throughout the CBR guidelines

Advocacy can be undertaken in dierent ways and by dierent people, eg sel-help

groups or disabled peoples organizations might advocate as a group to inuence deci-sion-makers to create change and ensure inclusive policies and programmes or people

with disabilities This element however ocuses on sel-advocacy, meaning individuals

speaking up or themselves

Successul advocacy depends on important messages being communicated and heard

However many people with disabilities experience barriers to communication, so re-

quently their voices are not heard and they have ew opportunities to inuence decisions

on the issues, policies and services that aect their lives (4) The Convention on the Rights

o Persons with Disabilities highlights the importance o communication or people with

disabilities Article 9 calls on States parties to ensure that persons with disabilities have

access on an equal basis with others to inormation and communications, including

inormation and communications technologies and systems , and Article 21 con-

frms the right to reedom o expression and opinion, including the reedom to seek,

receive and impart inormation and ideas on an equal basis with others and through all

orms o communication o their choice (5)

Sel-advocacy and eective communication are an important part o the empowerment

process or people with disabilities This element highlights the important aspects o

each o these and provides basic suggestions or activities which can be carried out by

CBR programmes


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BOX 3

Hansa was born into a rural amily in the remote village o Dhanki in Gujarat, India Her

amily were labourers, earning wages on a daily basis Prooundly dea, with low vision

and an intellectual impairment, Hansa was labelled the Lords curse by the villagers The

amily was shunned and their mere presence in the felds or other peoples homes was

seen as bad luck As Hansas amily was dependent on the work they ound each day or

their daily ood, this stigma and discrimination became a heavy burden that aected the

whole amily

Things began to change or Hansa and her amily when a CBR worker trained by Sense

International began providing support During regular visits to Hansas home, the CBRworker assisted Hansa to begin exploring her environment through games and activities

With time, Hansa began responding and making progress She learnt how to communicate

with sign language, count with beads and do simple arithmetic She began to help her

mother with household chores A previously unkempt and reclusive Hansa transormed

into a well-groomed and confdent adolescent

It took a while or the villagers to change their attitudes, but slowly things began to change

Farmers began to employ Hansas parents again and they took notice o Hansas skills and

abilities Hansa is now a arm hand and contributes to her amilys income The amily is

again invited to social and community events and Hansa has ormed a group o riends oher own age

Hansas journey towards a productive life


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Goal

People with disabilities are able to speak out or themselves

The role of CBR

The role o CBR is to assist people with disabilities to develop advocacy and communica-

tion skills, and to ensure that their environment provides appropriate opportunities and

support to allow them to make decisions and express their needs and desires eectively

Desirable outcomes

People with disabilities and their amilies have improved access to inormation andcommunication resources

Communication barriers or people with disabilities are reduced and/or eliminated People with disabilities and their amilies represent themselves in their respective

communities

CBR personnel are eective communicators and share inormation with all stakehold-ers including those who have communication diculties

Key concepts

Self-advocacy

What is self-advocacy?

Most people use sel-advocacy every day to ulfl their personal needs Sel-advocacy

is about people having a voice o their own It means knowing about their rights and

responsibilities, speaking up or their rights, and being able to make choices and deci-

sions about their lives

Why is it important?

Sel-advocacy is an important part o empowerment Many people with disabilities

spend much o their lives not being listened to and being told what to do Decisions are

usually made or them by others By learning sel-advocacy skills, people with disabilities

can learn to assert their rights, take control o their lives, and make the best decisions or

themselves Sel-advocacy can be as simple as people with disabilities making choices

about what to eat and what to wear, or at another level, it may mean that they speak

out publicly about issues which are important to them such as commenting about aservice they have used


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BOX 4

Children with disabilities played an important role in negotiations during development

o the Convention on the Rights o Persons with Disabilities In January 00, during the

sixth round o negotiations, a group o children rom Bangladesh, China and the United

Kingdom went to New York to present their perspectives on why the Convention needed

to include specifc measures to protect their rights In a widely circulated written statement,

they highlighted the need or recognition o the importance o ending institutionalization,

challenging violence and abuse, ensuring access to services and inormation At the

Conventions signing ceremony in March 007, two young disability advocates rom

Nicaragua and Armenia reminded delegates o the need to pay special attention to the

situation o children with disabilities in the implementation o the new Convention The

participation o these young people armed that children with disabilities can be eective

advocates or their own rights and are entitled to be involved in decisions that aect

them (6,7,8,9)

Eective self-advocacy

What support is required?

In many settings people with disabilities experience stigma and discrimination, and it

can be very dicult to voice their opinions, wants and needs Oten people with dis-abilities will need support to learn sel-advocacy skills (see Suggested activities) While

sel-advocacy is the ultimate goal or people with disabilities, in some situations they

may request or need the support o an advocate An advocate might be a amily mem-

ber, riend, member o a disabled peoples organization, an advocacy volunteer rom the

community, or a CBR sta member An advocate might assist a person with a disability to

access inormation, provide support at appointments and meetings, write letters about

important issues and speak on their behal in dicult situations

Communication

What is communication?

Communication is the way inormation and messages are transerred rom one person

to another and are the means by which social relationships between individuals and

communities are built and maintained There are three key ingredients or eective com-

munication: means, reason, and opportunity

The means: reers to how a message is sent This may occur via spoken or writtenwords, sign language, and/or assistive communication devices People require accessto the means o communication that best suits their needs (see Health component:

Assistive devices)


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The reason: reers to why communication takes place The many reasons include:expression o practical needs, eg asking or a drink; expression o thoughts, opin-

ions and eelings; to ask someone their name, to make riends or tell a joke

The opportunity: people need requent opportunities to communicate with othersMany people with disabilities do not have the opportunity to communicate, eg chil-dren with disabilities are oten hidden when visitors come to the amily home, an

adult who cannot speak ater a stroke may be excluded rom amily decision-making,

a dea person is unable to participate in a council meeting because a sign language

interpreter is not available Limited opportunities can aect the learning and devel-

opment o communication and other skills

Even without a voice people can communicate

While the concept o sel-advocacy or people with disabilities is about having a voice

o their own, it does not necessarily mean literally having a voice Some people withdisabilities cannot talk or communicate easily with others Physical, auditory, visual and

intellectual impairments can aect the way people communicate and the ease with

which others are able to understand them However, it is important to understand that

everyone has the ability to communicate even i they do not have the ability to speak

communication does not just include the spoken word

A person with a disability can still express his/her likes and dislikes, wants and needs, in

ways other than words Communication also includes display o text, Braille, tactile

communication, large print, accessible multimedia as well as written, audio, plain-lan-

guage, human-reader and augmentative and alternative modes, means and ormats ocommunication, including accessible inormation and communication technology (5)

(see Health component: Assistive devices)

BOX 5

Trang is years old and lives with his amily in a remote hill village Trang has cerebral palsy,

which has resulted in a communication impairment His amily and riends are unable tounderstand his speech and he is unable to use sign language as his motor movements are

uncoordinated Most people think Trang has an intellectual impairment

because o his limited communication skills Trangs

aunt approached the CBR programme and asked or

help CBR personnel helped create a communication

board, which contained pictures o the most important

activities and items in Trangs lie Trang now uses this

board as well as pointing with his eyes to express

his needs and exchange inormation and converse

with his amily and riends CBR personnel have also

encouraged his amily to start teaching Trang to read

Trang learns to communicate


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Communication barriers

Sel-advocacy also means that people with disabilities need to be listened to, and it is

important to identiy barriers to communication There are our major barriers: physi-

cal barriers, eg long distances or environmental distractions,barriers o meaning, eg the use o complex words

and specialized vocabulary, attitudinal barriers,

eg avoidance o communicating with someone

who has diculty expressing her/himsel, due to

impatience and arrogance, and positioning o

inormation eg inappropriate timing or too much

inormation For communication to be eective, it

is important to identiy those barriers which are

present and take steps to overcome them

Suggested activities

To support sel-advocacy and develop eective communication to empower people

with disabilities, CBR personnel need to address not only the individual and the environ-

ment, but also their own ability to communicate

Carry out a basic communication assessment

Resources, such as Lets communicate: A handbook for people working with children with

communication diculties (10), can provide comprehensive inormation about com-

munication assessment Some basic considerations when assessing the quality o

communication are as ollows

What method/s o communication is/are currently being used? How well are they being used? (consider the skills o people both with and without

disabilities)

Is the communication system understood by everyone?

Does the nondisabled person really understand the needs o the person with disability? Who does the person with disability usually communicate with? Why is the person with disability communicating? Is it to join in, express a practical

need, and/or express his/her eelings?

What kinds o opportunities to communicate does the person have? Does he/she havemany people to talk to or is he/she let alone?

Are there any other barriers to good communication? Does status, power and role inuence communication? For example, does the woman

with disabilities talk in ront o the man? Is the amily embarrassed to let their disabled

amily member communicate?


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Provide support to develop communication skills

CBR personnel will need to work closely with people with disabilities and their amilies

to ensure that they are able to develop communication skills Support will be based on

individual needs and circumstances and may be provided directly by CBR personnel orby others Again resources, such as Lets communicate, will provide many helpul sug-

gestions Following the identifcation o people with communication impairments, CBR

personnel may:

acilitate reerrals to specialist services where they exist, eg speech and languagetherapy;

ensure amilies are aware that speech may not be possible or some people andprovide inormation about other orms o communication, eg sign language, com-

munication boards;

ensure access to assistive communication devices where required; this may involveshowing amilies how to make devices (see Health component: Assistive devices); ensure that people who require hearing aids are provided with appropriate inorma-

tion about availability, ftting, care and use;

teach sign language or provide inormation about where to access sign languageinstruction;

encourage inclusion o people with communication diculties in everyday activitiesand experiences (eg visits to the market, cooking, cleaning, etching water) and teach

simple words, phrases and gestures that can be used in the community;

link people to groups/clubs which provide opportunities or social interactions, egdea clubs, stroke clubs, sports clubs or people with disabilities, inclusive playgroups

BOX 6

Children who have hearing impairments may need hearing aids to help them communicate

with their amilies, riends and teachers CBR programmes can provide assistance in

accessing aids, and provide instruction in how to use and maintain them CBR programmes

may also fnd out whether low-cost batteries are available and promote the use o signlanguage i appropriate

Stephanies hearing impairment went undetected or many years She lived in virtual

isolation, communicating only with her mother A volunteer doctor rom a local CBR

programme identifed that her hearing loss was the result o a chronic ear inection She

was provided with treatment or the inection and later ftted with a hearing aid Stephanie

started going to primary school, which opened up many new horizons or her She is no

longer isolated, and interacts with her riends on a daily basis

Stephanie hears a new world


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Address communication barriers

CBR programmes can help reduce or remove communication barriers in the environ-

ment by:

encouraging positive attitudes in the home environment to maximize communica-tion opportunities or children and/or adults with disabilities;

identiying key people with whom people with disabilities can communicate, andwho are interested in what people with disabilities have to say;

sharing inormation with others about peoples preerred means o communication;it is important to develop a means by which people with disabilities can do this inde-

pendently, eg a CBR programme could develop a my communication sheet or a

person with a disability which tells others about the best way to communicate with

him/her;

teaching amily and community members communication strategies that may be use-ul or people with disabilities, eg allowing extra time or communication, and usingsimple language, gestures, signs, drawings or Braille;

providing suggestions about how the environment might be adapted to maximizecommunication, eg a quiet space to talk or a person with a hearing impairment,

adequate light or a person who lip-reads;

promoting the development o a pool o trained sign language interpreters it maybe helpul to partner with a disabled peoples organization to do this;

using public meetings or the media to increase community awareness about the chal-lenges aced by people with communication problems;

together with disabled peoples organizations, promoting the need or and use oaccessible inormation and communication ormats in all activities, such as training,community events and development programmes


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BOX 7

On the island o Bohol in the Philippines, the local CBR programme introduced basic sign

language training or people with hearing impairments, their amilies and community

members In 008, over 00 community members, ranging in age rom eight to 8 and

rom all walks o lie, learned to sign, and have now gone on to teach sign language to

their amilies and riends This initiative aims to raise awareness about dea culture and

encourage people to respect and communicate with dea people

At the end o one o the our-week training

courses, the trainers (mostly dea adults) were

invited to conduct similar sign language

training programmes at the local

university The university paid them to

conduct these training programmes

Three o the most outstanding university

students have now joined the CBR project

as teachers o dea high-school students

Signing for a better future

Provide support for self-advocacy

CBR programmes should:

remember to ask people with disabilities what they want; provide people with inormation about their disability;

teach people about the social model o disability; provide inormation to people with disabilities about their rights and responsibilities; include people with disabilities in decision-making or the CBR programme; provide people with inormation about the services that exist in their communities; link people with disabilities to sel-help groups and disabled peoples organizations

where they exist in the community


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Ensure CBR personnel are eective communicators

To support people with disabilities through advocacy activities, CBR personnel need to

be eective communicators CBR personnel are required to interact with people rom

many dierent backgrounds and walks o lie, and need to be able to communicate inor-mation clearly, especially when topics are dicult or sensitive, where there are class or

status dierences, where a common language is not shared, or where there are dier-

ences in literacy level CBR personnel need to:

encourage a communication-riendly environment and support people with com-munication diculties to express themselves;

speak the same languages and dialects as the local communities; know the local sign language, and how to use alternative ways o communicating; understand and respect local cultural, class and caste dierences, and be a good role

model by communicating respectullywith people with disabilities, women

and other marginalized groups;

communicate regularly with vari-ous stakeholders in the health,

education, livelihood and social

sectors, and acilitate dialogue

during stakeholder meetings;

know how to use the media orcommunicating with the public


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COUNIT OBIITION 19


Introduction

Community mobilization is the process o bringing together as many stakeholders as

possible to raise peoples awareness o and demand or a particular programme, to assist

in the delivery o resources and services, and to strengthen community participation or

sustainability and sel-reliance A lot can be achieved when people rom dierent parts o

the community share a common goal and actively participate in both identiying needs

and being part o the solution Community mobilization helps to empower communi-ties and enable them to initiate and control their own development

Little progress will be made towards mainstreaming disability until community support

is built up and the dierent sectors o society become actively involved in the process o

change (11) CBR programmes can use community mobilization to bring together stake-

holders in the community, eg people with disabilities, amily members, sel-help groups,

disabled peoples organizations, community members, local authorities, local leaders,

decision- and policy-makers, to address barriers within the community and ensure the

successul inclusion o people with disabilities in their communities with equal rights

and opportunities

This element ocuses on how CBR programmes can bring people together to act and

bring about change in the communities in which they operate

1. Bringingpeople

together

2. Raisepeoples

awareness

3. Assist in

the deliveryof resourcesand services

4. Facilitateand strengthen

communityparticipation

Self-relianceand

Sustainableprogramme

Fig 1: Four steps of

community mobilization


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BOX 8

In Colombia, many municipalities run CBR programmes which are unded and managed by

local government In 00, ater a ew years o experience, one local government, realizing

that many o its programmes were not sustainable and lacked community ownership,

helped to establish a pilot project, FUNDISCA (Foundation o the Disabled Caucasian), in

the municipality o Caucasia, north o Colombia

The key objective o FUNDISCA was to acilitate the empowerment o people with

disabilities by allowing them to assume leadership roles within the CBR programme and to

play an active role in planning and controlling their own lives FUNDISCA mobilized many

people in the community to come together and support the programme, including peoplewith disabilities, parents, caregivers, displaced individuals, indigenous people, community

members and community leaders

FUNDISCA now has 8 members and has engaged 0 volunteers who work as CBR

personnel These CBR personnel are primarily responsible or identiying people with

disabilities and providing them and their amilies with the necessary support They work

to promote sel-esteem, amily inclusion, and access to services in the health, education,

labour and employment sectors

FUNDISCA has experienced several setbacks, eg some members putting their owninterests beore the groups interests, limited availability o resources or addressing

disability issues at municipality level, and institution/service providers oten demonstrating

limited sensitivity regarding disability issues

However, with time and eort FUNDISCA has overcome these diculties and has become

a dynamic and well-established oundation Because o its continuous community

mobilization strategy, FUNDISCA has stimulated the community to become interested

and involved in disability

activities It has brought

people with disabilities andtheir communities closer

together, and encouraged

community leaders to

become advocates or

disability issues with the

local authorities

Empowerment through leadership roles


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COUNIT OBIITION 21

Goal

Local communities are empowered to remove barriers or people with disabilities and

their amilies, and play an active role in acilitating the inclusion o people with disabili-

ties and their amilies in community activities

The role of CBR

The role o CBR is to mobilize the community to ensure that negative attitudes and

behaviours towards people with disabilities and their amilies change, that the com-

munity is supportive o CBR programmes, and that disability is mainstreamed across all

development sectors

Desirable outcomes

Communities are aware about the needs, and motivated to improve the quality o lie,o people with disabilities and their amily members

Barriers in the community are reduced or removed or people with disabilities andtheir amily members

Communities are knowledgeable about CBR and how community resources can beused to develop and sustain CBR programmes

Communities participate in planning, implementing and managing CBR programmes

Key concepts

Denition of community

The titlecommunity-based rehabilitation already suggests that the community plays a key

role in any CBR programme A community can be described as people living together

in some orm o social organization and cohesion However, generally communities arenot homogeneous, and their members oten have dierent political, economic, social

and cultural characteristics, interests and aspirations (12) For example, in a traditional

rural community, members may belong to dierent ethnic groups, speak dierent lan-

guages, have dierent religious belies and engage in dierent cultural practices

Community stakeholders

Communities consist o dierent people, groups and organizations, many o whom are

important stakeholders or CBR programmes These include people with disabilities and

their amily members and neighbours and riends, schoolteachers, sel-help groups, disa-

bled peoples organizations and local authorities The Management chapter (booklet 1)


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provides more detailed inormation on stakeholders, including a summary o their key

roles and responsibilities Note that within each community, some stakeholders are more

inuential than others (eg tribal, religious or political leaders) and have more power to

make decisions about issues that concern the community

Disability as a community issue

Community development issues that relate to health, education, water and sanitation,

housing, transportation and the environment, all have an impact on the incidence and

prevalence o disability (see Health component) So disability is an important issue

within communities, yet it is most oten ignored

In many communities there are barriers which impact on the quality o lie o people

with disabilities and their amily members These include physical/environmental, atti-tudinal, cultural, and services, system and policy barriers More detailed accounts o the

dierent types o barriers that people with disabilities and their amily members may

encounter are given in the dierent components o these guidelines It is important that

CBR programmes are able to identiy and understand the barriers in each community

which impact most on people with disabilities and their amilies


Within the development sector there is a strong ocus on communities taking a leadrole in development activities rather than just being the receivers o grants and services

The community is seen as the best judge o its own problems, and to have the ability

to undertake appropriate action to solve these problems CBR is a strategy or com-

munity-based inclusive development so the importance o community participation is

acknowledged, eg communities are listened to and directly involved in decision-mak-

ing and activities that aect their lives (see Introductory booklet)

Community mobilization is a strategy that CBR programmes can use to help make dis-

ability everyones business, and not only that o disabled people It is a strategy that

can be used by CBR programmes to engage community stakeholders in CBR activitiestowards inclusive development When CBR programmes involve communities in their

work it is more likely that the benefts or people with disabilities and their amily mem-

bers will continue even ater unding and support may have ended


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COUNIT OBIITION 23

BOX 9

In the Adaama province o Ethiopia, a CBR worker noticed a bridge across a river was

broken It was dicult or people with disabilities to use this bridge, and many others also

experienced diculties, or example, a young boy broke his arm while trying to pass over

the river The CBR person contacted the school and the local government authority, and

ormed a committee to improve accessibility o the area This committee mobilized the

community to contribute money and also physical labour A new bridge was eventually

built in partnership with the local government, which acilitated the construction process

Ater the new bridge was completed, the local government was motivated to do more or

people with disabilities and decided to make

improvements to the local school to

provide increased access or children with

disabilities The CBR programme realized

that the community is a great resource

and can be encouraged and motivated

to improve their living conditions

Even with ew resources, many things

can be achieved, especially when the

community owns the idea

Building bridges to motivate communities


As community mobilization is a continuous process, this element does not provide a

step-by-step guide, but suggests activities that are very broad and organized around

key headings Many o the activities are common to other sections o these guidelines,

particularly the Management chapter

Find out about the community

To mobilize a community to address disability issues and support the development and

implementation o CBR, it is necessary to become knowledgeable about the community

The CBR programme must develop an understanding o the context in which people

live, eg o the physical, economic, social, political and cultural context, and the issues

and problems aced by the community A situation analysis is an eective way to do this,

and a detailed description o a situation analysis is provided in the Management chapter

Identiying power structures in the community is an important activity or commu-nity mobilization People in ocial positions o power, eg local government leaders,

leaders o community groups and organizations (sel-help groups, disabled peoples


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organizations) need to be identifed, as well as

others in the community who may have inu-

ence in the dierent development sectors (such

as teachers in the education sector) It is impor-

tant or CBR programmes to learn about thesepower structures because people with power

and inuence have the ability to mobilize oth-

ers to support initiatives in the community

It is also important when learning about the community to fnd out about the current

attitudes and behaviours directed towards people with disability and their amily mem-

bers Peoples behaviour towards others oten reveals their attitudes; by observing their

behaviour, it is possible to perceive whether they are disrespectul, patronizing, oppres-

sive, or neglectul

Build trust and credibility within the community

It is important that CBR programmes take the time to establish trust and credibility with

stakeholders in the community CBR programmes should:

ask permission rom local leaders to work with the community; be visible and active in their communities and support the activities o other

stakeholders;

make contact with many dierent stakeholders in the community in order to get to

know them, begin to understand their problems, and work out the best ways to work

with them;

regularly share important inormation and updates about the CBR programme; be honest and transparent and not make promises to the community that cannot

be met

Raise awareness in the community

To successully mobilize a community and gain support or disability initiatives, commu-

nity members must frst develop awareness about disability and begin to understandwhy it matters and what action they can take Many community members will have

limited knowledge about disability and as a result will have negative attitudes and

behaviours towards people with disabilities; disability may merely be perceived as a

health issue, and approached with pity and stigma

There are many dierent ways to teach and create awareness about disability in the com-

munity For example CBR programmes could use group discussions, roleplays, ashcards,

storytelling and songs, drama, puppet shows, posters, flms and radio

There are important things to remember when raising awareness about disability in thecommunity, such as:


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COUNIT OBIITION 25

messages must be simple; the methods used should be appropriate to the local culture; awareness-raising activities will have a greater impact when people with disabilities

are directly involved in implementing them;

attitudes and behaviours take time to change and is an ongoing process

BOX 10

Kalume is a young boy with epilepsy who lives with his amily in a rural Kenyan community

Kalume has a mobility impairment as a result o leg contractures that developed ater he

had a seizure near a fre and was burnt Many o his skills, eg communication skills, were

delayed because he was hidden and isolated Kalumes amily were considered outcasts inthe community because o his disability and as a result they ound it very dicult to meet

even their basic needs

Kalume was identifed during a disability survey conducted in the district A CBR worker

took Kalume to a health centre so he could get medication to control his seizures

Arrangements were made by the Kenya Medical Research Institute (KEMRI) in collaboration

with the Association o People with Disabilities Kenya (APDK) to access surgery or Kalume

so his contractures could be corrected Kalume also received basic therapy to improve his

skills Follow-up with Kalume and his amily was conducted every month in the community

by KEMRI feldworkers

The community was also sensitized on disability including the possible causes, through

the chies barazas (gatherings) KEMRI sta helped the community to understand that

epilepsy is not contagious and that witchcrat does not bring disability, and that it is the

responsibility o every community member to support children with disabilities and their

amilies Regular communication with community members helped to change attitudes

towards people with disabilities and their amilies, and some members o the community

even made a house or Kalumes amily

Changed attitudes


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Motivate the community to participate

It is important that CBR programmes motivate community stakeholders to address dis-

ability issues and work towards inclusive development Dierent stakeholders within

the community will need to be approached and motivated to encourage their partici-pation in community action and change CBR personnel need to convince stakeholders

that CBR is a strategy which can ultimately beneft the whole community, not just peo-

ple with disabilities Sensitizing and orienting community members to the CBR strategy

(concept, philosophy, goal, purpose) and to how it can assist the community is thereore

an important activity

Understanding what motivates community stakeholders is critical In the early stages o

community mobilization it may be necessary to provide incentives to increase the inter-

est and motivation o stakeholders (11) However, it is suggested that CBR programmes

work to ensure that people understand the value o their participation and the satisac-tion they can gain through participating, rather than provide incentives or rewards CBR

programmes could, or example, invite key stakeholders in the community (community

leaders) to observe CBR activities or organize feld visits to other communities where

CBR activities are working well

Create opportunities for community participation

Communities consist o many dierent stakeholders, with dierent opinions, ideas, pri-

orities and agendas For community mobilization, it is not necessary to approach all thestakeholders at the same time; dierent sections o the community can be mobilized at

dierent times to participate in dierent aspects o the CBR programme

Stakeholders can be invited to participate in dierent CBR activities in the commu-

nity, eg in a situation analysis to help raise awareness about community needs, rights,

resources, capacities and roles (see Management chapter)

CBR programmes need to identiy barriers that may prevent community stakehold-

ers rom participating, and to work with these stakeholders to overcome the barriers

Barriers to participation may include time constraints, cultural limitations, amily respon-sibilities, work responsibilities or low sel-esteem


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COUNIT OBIITION 2

Bring relevant stakeholders together

It is important to bring stakeholders together to initiate the discussion and negotiation

required or action and change Organizing regular meetings with the dierent stake-

holders in the community is a good way to do this The balance o power must be takeninto account in the meetings, to ensure that vulnerable groups are not excluded and

disempowered

Build capacity in the community

Community members play a vital role in CBR programmes and it is necessary to consider

what training they might need to upgrade their skills and knowledge Capacity-building

is not discussed in detail here as it is included in the Management chapter

Celebrate achievements

To ensure the continued motivation and participation o community stakeholders, it

is necessary to recognize their contributions and achievements Celebrations can re-

energize the community, attract urther interest rom both within and outside the

community, and build support or CBR programmes and inclusive development


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POITIC PRTICIPTION 29

Political participation

Introduction

A narrow defnition o politics reers to the activities o governments, politicians, or

political parties A broader defnition includes the interrelationships between people

between men and women, parents and children, people with and without disabilities

and the operation o power at every level o human interaction

Political participation includes a broad range o activities through which people developand express their opinions on the world and how it is governed, and try to take part in

and shape the decisions that aect their lives These activities range rom developing

thinking about disability or other social issues at the individual or amily level, joining

disabled peoples organizations or other groups and organizations, and campaigning

at the local, regional or national level, to the process o ormal politics, such as voting,

joining a political party, or standing or elections

Ordinary people can participate in politics, and every individual has the right to partici-

pate, including people with disabilities The Convention on the Rights o Persons with

Disabilities, Article 29 on participation in political and public lie, mandates that States

Parties shall guarantee to persons with disabilities political rights and the opportunity

to enjoy them on an equal basis with others (5)

People with disabilities ace many barriers to political participation, and many choose not

to participate in politics because the issues that concern them are oten ignored and/or

they eel they have limited power to inuence change and decision-making Promoting

political participation or people with disabilities is an important part o the empower-

ment process Until more people with disabilities participate, their voices will not be

heard and their right

to equity and access

to the health, educa-

tion, livelihood, and

social sectors will be

restricted


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BOX 11

The National Union o Disabled Persons o Uganda (NUDIPU) was ormed in 87 to

advocate or the equalization o opportunities or people with disabilities, and or their

involvement and participation in the policy, planning and implementation o disability

programmes in close partnership with the government, civil society and the general

public Ater many years o political lobbying by NUDIPU, people with disabilities are now

represented by fve parliamentarians, and also by many councillors in local governments at

district and subcounty levels

Like many countries, Uganda has laws which relate to people with disabilities including the:

Council or Disability Act 00, Policy on Disability 00, Persons with Disabilities Act 00,and Equal Opportunities Act 007 The Act o 00 outlines provisions or accessibility and

penalties or those who do not adhere to the law

Similar laws exist in many countries, but oten implementation is poor and the public

unaware o the existence and implications o the laws NUDIPU believes that I users dont

come out to claim/demand their rights, then the related acts may remain on paper and the

intended users may never beneft

The Centenary Rural Development Bank Ltd in Gulu, Uganda, was not accessible or people

with disabilities The building had several steps which made it dicult or people withmobility impairments, particularly wheelchair users, to enter NUDIPU discussed this issue

with the bank, but the bank reused to modiy the building entrance to make it accessible

The Persons with Disabilities Act 00 states that It shall be the responsibility o all organs

in public and private institutions to provide suitable access or persons with disabilities and

universal standard designs or toilets NUDIPU took the matter to court and, ater a series

o hearings, the judge ruled in avour o NUDIPU, directing the Bank to make their building

accessible and cover all the court expenses incurred by NUDIPU As a result o the court

case, Centenary Bank management directed all branches throughout the country to ensure

their premises were accessible orpeople with disabilities

The Gulu experience sets a good

example or the disability movement

People with disabilities and their

amily members need to have political

awareness to achieve their rights It

has also proved that people must be

mobilized and organized in order to

advocate or their rights and bringabout change in their communities

The Gulu experience


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Goal

People with disabilities participate in political and public lie on an equal basis with

others

The role of CBR

The role o CBR is to ensure that:

people with disabilities and their amilies have the inormation, skills and knowl-edge to enable them to participate in politics, and have access to opportunities to

participate;

disability issues are visible so that they are integrated into political decision-makingand are at the centre o development policies and programmes

Desirable outcomes

CBR personnel have increased awareness o the political system People with disabilities and their amily members have increased political awareness Governments and civil society are aware o disability issues and the rights o persons

with disabilities and their amilies to participate in political processes

Barriers which prevent the participation o people with disabilities and their amiliesin political processes are reduced or removed

Key concepts

Power and decision-making

Power is the ability to make inormed choices and the reedom to take action Decisions

are made by people with power, and in all societies there are some people who are more

powerul than others because o actors, such as age, gender role, ethnicity, politicalaliation, economic situation (13) Power is present at every level o society, rom the

amily through to government level understanding who has the power to make deci-

sions and why they have this power is an important frst step in political participation

Barriers to political participation

The barriers to political participation that people may ace are similar to the barriers

mentioned in other components o the CBR guidelines In summary they include the

ollowing


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Poverty poor people are mostly ocused on survival activities; their basic needsoten need to be met frst beore they can participate, so they may have limited time

or interest

Education without inormation and knowledge, meaningul participation in politicscan be dicult

Social isolation there is a limited network to support and encourage politicalparticipation

Personal actors people may have limited confdence or motivation to participate Stigma and discrimination majority groups may have prejudices, ears and discom-

ort towards people with disabilities and thereore may not support their participation

Lack o disability-riendly processes access barriers can make it dicult or peoplewith disabilities to participate, eg inaccessible voting booths

Lack o role models in many countries or communities there are ew examples opeople with disabilities in high profle political positions

Legal barriers in many countries people with disabilities are not permitted to vote,eg people with mental health problems

It is essential that CBR programmes are realistic about the level o participation that

is practically possible or people with disabilities living in poor communities, and that

activities are designed taking potential barriers into account

Disability as a political issue

Many o the disadvantages that people with disabilities and their amily members aceare because governments and policy-makers do not address some o the main problems

o disability, eg the social barriers and discrimination The needs o people with disabili-

ties are rarely at the top o the policy agenda, especially in places where resources are

limited As a result, there are very ew inclusive mainstream programmes and disability-

specifc services Where disability is addressed in policies, implementation is oten poor

and as a result there are still many barriers in society or people with disabilities

Government

A practical understanding o how the government works, eg knowledge about political

structures and processes, knowing how power ows through them, and an understand-

ing o how to inuence them can be useul or advocacy to build alliances and inuence

change There are generally three branches to government: the legislative branch (ie

parliament/assembly), the executive branch (ie government and civil service), and the

judicial branch (ie the courts) Countries are divided into administrative areas and there

are dierent levels o government, eg at local, district, regional and national levels

At each level these branches may have democratically elected legislative bodies who

pass laws The legislative branch is elected by local people At the most local level, this

may be the village council, then the district or regional assembly, and then the nationalassembly/parliament


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Political quotas

To ensure political representation, many countries have reserved a percentage o seats

on elected bodies at the local, regional and national levels and/or a percentage o

government jobs or marginalized groups, eg women, ethnic minorities, people with dis-abilities These are reerred to as quotas, armative action or positive discrimination


Ensure CBR personnel develop awareness of the political system

CBR programmes need to have a practical understanding o how the government works

to enable them to build partnerships and inuence change They could develop this

awareness by:

identiying key legislation and policies that are related to disability and the develop-ment sectors;

researching the role o the government and the responsibilities o each department which department is responsible or what and who has the power to make decisions;

fnding out about the political structure at the local level, how government decisionsflter down to this level and i there is local power or decision-making;

meeting with political representatives regularly, including representatives o theopposition, regardless o personal aliations; CBR programmes need to be nonparti-san, ie not subscribe to, or be thought to subscribe to a particular party or power-base

Facilitate development of political awareness

Many people, including people with disabilities, and especially the poor, may have low

levels o political awareness, eg they may not know how to vote or may be unaware o

the existence o national laws regarding disability rights or international conventions,

such as the Convention on the Rights o Persons with Disabilities To encourage political

participation, CBR programmes can:

encourage adults with disabilities to join literacy programmes (see Educationcomponent);

ensure people with disabilities have access to advocacy and rights-based training; link people with disabilities to sel-help groups and disabled peoples organizations,

where they can learn useul skills or political participation, eg public speaking, prob-

lem-solving, campaigning;

ensure children and adolescents are included in activities where they have theopportunity to express their opinions, think and make decisions, and understand the

consequences o their actions


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Raise disability awareness within the political system

Quite oten discrimination and exclusion o people with disabilities is due to ignorance

and lack o knowledge at government level Thereore another part o the strategy

towards enabling people with disabilities to participate in politics is to develop disabil-ity awareness within political systems Suggested activities include:

making local political representatives and bureaucrats aware that legislation relatedto disability exists;

conducting disability-awareness training with local councils it is important that peo-ple with disabilities take leadership roles in this training;

involving political leaders and representatives in activities carried out by CBR pro-grammes and people with disabilities, eg invite them to attend the inauguration o

a new CBR programme or events celebrating the International Day o Persons with

Disabilities political leaders and representatives will want to be seen as contributorsto the well-being o their constituents, and CBR programmes need to take advantage

o this

Facilitate access to political processes

CBR practitioners need to understand the numerous barriers to political participation,

and in partnership with sel-help groups, disabled peoples organizations and others,

can work to ensure that these barriers are reduced and/or removed Suggested activi-

ties include: providing recommendations to local authorities about making voting sites and pro-

cedures accessible to people with disabilities when elections are being planned this

includes ensuring buildings are physically accessible and voting materials are easy to

understand and use by people with a range o impairments;

encouraging national electoral commissions and advocacy organizations to inormvoters with disabilities about their voting rights and what assistance is available to

enable them to participate;

encouraging political leaders and parties to develop accessible propaganda materialand to depict voters with disabilities on these materials;

investigating transport options or people with disabilities,particularly those with mobility impairments, to enable

them to reach voting venues;

identiying the political seats/government jobsthat are reserved or marginalized groups and

encourage people with disabilities to take

advantage o these positions


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BOX 12

The International Foundation o Electoral Systems (IFES) was awarded a grant rom the

Finland Ministry or Foreign Aairs to design and pilot-test a ballot in Ghana that would

enable blind voters to vote secretly and independently As in most low-income nations,

Ghanaian voters who are blind rely on assistants to help them vote The ballot that was

pilot-tested did not use Braille, but instead relied on tactile cues, as less than % o blind

adults in Ghana are literate The ballot was tested in elections in 00, and was designed in

collaboration with the Ghana Electoral Commission, the Ghana Federation o the Disability

Associations, and Action on Disability and Development o Ghana ()

Enabling the blind to vote


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SP GROUPS 3

Self-help groups

Introduction

Sel-help groups are inormal groups o people who come together to address their

common problems While sel-help might imply a ocus on the individual, one impor-

tant characteristic o sel-help groups is the idea o mutual support people helping

each other Sel-help groups can serve many dierent purposes depending on the situ-

ation and the need (15) For example, within the development sector, sel-help groups

have been used as an eective strategy or poverty alleviation, human development andsocial empowerment (1), and are thereore oten ocused on microcredit programmes

and income-generating activities (see Livelihood component)

Over the past 2 years, sel-help groups have been used in various orms in the disability

sector, and sel-help groups o people with disabilities and their amilies are engaged in

a whole range o activities including health care, rehabilitation, education, microcredit

and campaigning Sel-help groups can acilitate empowerment; belonging to a group

(or organization) is one o the principal means through which people with disabilities can

participate in their communities (see Disabled peoples organizations), and it is through

the involvement in groups that they can begin to develop their awareness and the abil-ity to organize and take action and bring about change (2)

While many CBR programmes ocus their activities at the level o the individual, eg on

providing direct assistance, such as basic therapy, they are encouraged to bring people

with disabilities and their amily members together to orm sel-help groups to address

and resolve their own problems Sel-help groups are a key element o the CBR matrix

and can be a means to achieving the newly emerging CBR goals o inclusion o and

ownership by people with

disabilities, and to enhance

their participation in devel-opment processes (15) This

element mainly ocuses on

how CBR programmes can

acilitate the ormation o

new sel-help groups, but

it also looks at the linking

o CBR programmes with

existing sel-help groups o

people with disabilities and

their amilies, including main-stream sel-help groups


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BOX 13

The Landmine Survivors Network (LSN) started working in the Quang Binh Province

o Viet Nam in 00, where the network has helped establish sel-help groups or

landmine survivors Many o these survivors have injury related impairments but a

unique characteristic o the groups is that they also include people with disabilities

unrelated to conict These groups aim to acilitate the process o sel-empowerment by

overcoming social exclusion, enhancing participation in decision-making processes and

improving quality o lie The ultimate goal o LSN-Viet Nam is to have a sel-help group in

each commune

Outreach workers rom LSN-Viet Nam, many o whom have a disability, are responsibleor supporting communes that have expressed an interest in orming a sel-help group

These workers start by ostering collaborative relationships with the local authorities

as well as with major representative organizations such as the Farmers Association, the

Womens Union and the Veterans Association They provide training on the concept o

sel-help groups or the organizing group and guidance on the legal steps associated with

registration o the group with the local authorities, and arrange initial stakeholder meetings

Once groups are ormally registered and ormed, they are run independently by the

members Outreach workers provide ongoing support where required For example, they

may provide training or group members on disability issues and/or group acilitation (eghow to chair meetings) Group members are responsible or directing activities which may

include: inviting representatives rom local authorities to discuss health services or people

with disabilities, working with local authorities to improve the quality and accessibility o

health services or people with disabilities, organizing local sports events, participating in

national sports events, providing peer education on health care and treatment, creating

small business ventures and work opportunities, and promoting a positive image o people

with disabilities in the local community Many sel-help groups have assumed responsibility

or the National Day o People with Disabilities in Viet Nam by setting the agenda or the

day and leading public celebrations

One o the greatest achievements

o the sel-help groups is the impact

they have had on raising the awareness

o local authorities about the needs

o people with disabilities and

the important participatory role

people with disabilities can play in

addressing their needs The next

step is to bring all sel-help groups

together under one umbrella

Self-help groups for landmine survivors


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SP GROUPS 39

Goal

People with disabilities and their amily members participate in groups to resolve com-

mon problems, enhance their individual strengths, and improve their quality o lie

The role of CBR

The role o CBR is to provide support and assistance to people with disabilities and

their amilies to orm new sel-help groups or sustain existing ones Where mainstream

groups exist within communities, eg womens groups and microcredit groups, the role

o CBR is to promote the inclusion o people with disabilities and their amily members

in these groups

Desirable outcomes

Sel-help groups exist within local communities or people with disabilities and theiramily members

Sel-help group members develop knowledge and skills that enable them to becomecontributors in their amilies and communities

People with disabilities and their amily members are able to access mainstream sel-help groups that are available to other members o the community

Sel-help groups promote CBR, and members become involved in the planning and

implementation o CBR programmes

Sel-help groups join together to orm ederations and become sel-sucient

Key concepts

Self-help groups

Characteristics

Some common characteristics o sel-help groups that are associated with CBR pro-

grammes include their:

voluntary nature they are run by and or group members, have regular meetings,and are open to new members (1);

generally being ormed in response to a particular issue, eg no access to educationor children with disabilities, limited income-generating opportunities;

clear goals, which originate rom the needs o group members and are known andshared by all members (15);

inormal structure and basic rules, regulations and guidelines to show members howto work eectively together;


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participatory nature involving getting help, sharing knowledge and experience, giv-ing help, and learning to help onesel (1);

shared responsibility among group members each member has a clear role andcontributes his/her share o resources to the group;

democratic decision-making; governance by members, using an external acilitator only i necessary in the orma-tion o the group (15);

evolution over time to address a broader range o issues; possibility o joining together to orm aederation o groups across a wider area

BOX 14

In Kodobeda, Akwapim South District o the Eastern Region, Ghana, our people with

disabilities decided to orm a sel-help group to improve their economic situation At a

meeting with the chie and elders o the village, they asked to be given three emale goats

to help them start an animal husbandry initiative It was

agreed, and the group started their initiative The goats

soon gave birth The young goats were given to one

member to rear, whilst the original goats remained

with the frst member o the group When the goats

gave birth again, the kids remained with the memberand the original goats were sold, and the money used

to buy another goat or the next member The process

went on until all the members had goats to rear and

were able to earn enough to sustain themselves

Self-help groups provide livelihoods

Membership

Group members are volunteers, in the sense that they are not paid, but they work sys-tematically and regularly to change their own situation through mutual support Within

the context o CBR, sel-help groups usually comprise people with disabilities and their

amilies These groups are usually small, consisting o only a ew people, but over time

may grow and include 3 members Small groups enable eective participation o all

members in discussions and decision-making, whereas larger groups may have more

power and inuence

Facilitation and leadership

CBR personnel may be required to take on a acilitator role, particularly when new sel-help groups are being ormed CBR personnel can provide guidance to ensure chosen

leaders do not dominate the group; they can prevent the hijacking o benefts by some


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SP GROUPS 41

individuals, keep the group motivated, and provide training on dierent aspects o

group unctioning (15) It is not necessary to be a person with a disability to work with

people with disabilities, but the shared experience o discrimination may strengthen

understanding and empathy between an external acilitator and a group A acilitator

with a disability may also be a role model or people with disabilities in the group

BOX 15

The CBR project in the Tibet Autonomous Region, Peoples Republic China, works with

parents o children with disabilities to discover new ways o responding to their childrens

needs These parents identifed that prejudicial attitudes and discriminatory behaviour

directed towards their children was a priority issue because it prevented their children rom

attending school, and it was uncomortable taking their children into the community CBR

personnel, who had previously been introduced to the concept o sel-help groups, saw the

potential beneft that a sel-help group would have or this group o parents

A couple o parents decided to create a sel-help group and started by ocusing on raising

public awareness about disability They held these awareness sessions in local tea houses

As the parents came to rely upon one another, and drew increasing comort rom sharing

their similar experiences, the group grew rom two to members The community was

positive and slowly their attitudes began to change, with many community members

oering support, eg through donating wheelchairs, during these awareness sessions This

was a great source o encouragement Many children with disabilities also started attending

schools and amilies are now accepted and included in community activities

The sel-help group has slowly branched into other activities with the support o the CBR

programme It has opened a teahouse, dedicating the profts to poorer amilies who have

members with disabilities The CBR programme provided the initial grant and business

training The sel-help group has also started visiting amilies at home to provide assistance

when they are fnding it dicult to ollow their childs rehabilitation plan, due to low

educational levels or work obligations The CBR programme provided training or sel-help

group members on simple rehabilitation

activities to promote child development

and CBR personnel accompany them

on home visits, to slowly build

their capacity and confdence

levels The success o this sel-help

group has inspired others to orm

similar groups

Promoting self-help groups


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Challenges of organizing self-help groups

Rural vs. urban self-help groups

CBR experience shows that it is oten easier to acilitate the ormation o sel-help groups

in rural areas Formation o sel-help groups in urban settings can be particularly di-

fcult (15) because o requent migration and diculties in building trust and a sense

o belonging among group members Although it should be noted that, in rural areas,

geographical isolation and the long distances group members may need to travel, and

the limited means o communication, may make it dicult to hold regular meetings

Women and men

The CBR experience indicates that womens groups are generally easier to orm thangroups or men Women tend to have a stronger sense o solidarity towards one another

and work more easily in a collaborative way Where groups have both male and emale

members, it is important to ensure that women are represented, their voices heard and

their issues discussed

Levels of education

Within sel-help groups, members may have varying levels o education It is likely that

people with disabilities will have lower levels o education and thereore may be disad-

vantaged It is important that sel-help meetings are not monopolized by those peoplewho may have a higher level o education, and or those sel-help groups that are based

around microcredit, it is important that there is not an uneven distribution o benefts To

prevent inequalities rom arising within groups, time needs to be dedicated in the early

stages o group ormation to building a sense o cohesion and empowerment among

the less literate or vocal members

Single-impairment groups

Many groups have been ormed or and by individuals with similar impairments While

single impairment groups have a clear and well defned purpose, oten cross-disabilitygroups are more practical in small communities where there are ew people with one

particular type o impairment The basic needs o people with disabilities, irrespective

o their impairments, are the same, eg ood, shelter, health care, education Single-

impairment groups can oten divide people with disabilities and set up competition or

scarce resources

Dependency

Disability is oten associated with dependency, eg with doing things or people with

disabilities rather than doing thing

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