Independent Living Institute

Organisation Building

Disability Awareness in Action
Resource Kit No. 4


Download the "Organisation Building Kit" as a PDF file (135 KB)

Part Two, Skills and Strategies


1. What is Development?


Change is essential if an organisation is to adapt to different circumstances and improve the way it copes with problems As groups develop, internal problems may also come to light. We can learn from our own and others' experiences about the best ways to promote and achieve change.

Development is needed within any organisation. The methods used to solve the problems faced by the membership and to meet the aims of the group need improvement and change from time to time. New aims, new projects and changes within the wider society affect the way an organisation works.

A group that is not constantly aware of the need to change, nor ready to change and adjust, cannot continue to fulfil its original functions and survive in the long-term. Though most people are aware of this, there is still resistance to change and many organisations suffer from inaction. It is important to understand the barriers to change, within individuals and within the structure of organisations, and to see the possibilities for continuing positive development.

Keep in mind that developing efficiency means improving the chances of meeting the organisation's goals. Everyone needs to see the benefits of change and development.

The most important resource for development is the organisation itself. By learning from experiences within the group, the organisation can develop. Another important consideration is to learn from the experiences of other organisations - state bodies, businesses, etc. You won't have the same resources as these types of organisation. Nevertheless, their example can be helpful. A combination of learning by your own and others' experiences is probably a good method to develop the group.


Seeing the Organisation as a Whole

It is important to try to see the connections between the various parts and functions of an organisation. If it is not working well, certain parts will have to be changed. The changes in those parts will affect the organisation as a whole. Too often, changes are made at the grassroots level when it is the management of the organisation that needs to be restructured, replaced or forced to look critically at its work. Looking at the organisation as a whole includes understanding how the organisation's various parts and levels fit together and how the organisation connects with the outside world. This process includes regular monitoring and evaluation of activities.


Working Together Towards Equality for All

Traditionally, professionals have divided disabled people up into impairment groups. Based on a medical model of disability, people with sensory impairments have been kept separate from people with physical or intellectual impairments and each group has been encouraged to feel that their needs and "problems" are specific and that the solutions to those problems are also individual and specific.

Many of the oldest and most traditional organisations of or for disabled people are single-impairment groups - such as national federations of blind or deaf people. Much has been achieved on specific access needs by such groups and it is vital that they continue to campaign for their members. It is also useful for such groups to develop links with other single or cross-impairment groups, so that disabled people can campaign together against the common barriers that prevent full participation for all of us. Working together, we can find the best solutions as well.

In the United Kingdom, wheelchair users asked for "dropped kerbs", so that they could cross roads more easily. But people with visual impairments preferred having kerbs, so that they could tell the difference between road and pavement easily.

By talking to each other, disabled people were able to overcome the barrier and find a solution that works for everyone: dropped kerbs that have a textured surface in concrete so that blind people know when they have reached the edge of the pavement.

It is society's structures, services and attitudes, not disabled individuals, that must change. We need to work towards long-term solutions through planning and attitude change, not just short-term solutions for a particular individual. By working together, disabled people can put the emphasis on shared oppression. We can learn from each other and support each other. Newer groups, such as people with psychiatric impairments and people who have HIV or Aids can also prove useful partners and allies - and perhaps provide new members for cross-impairment groups.

It is very important for different groups of disabled people working together to inform and educate each other. We need to help each other to understand, for example, the best way to present material in accessible ways to people with learning difficulties (intellectual impairment), or what the access.' needs of wheelchair users are. We have these skills and we can teach each other. We can talk together about smoking policies and consider adapting our behaviour so that we do not oppress other disabled people. Just as disabled women and other particular groups have something special to contribute, So impairment groups working together can inform and improve the policies and activities of the group

If you belong to a cross-impairment organisation of disabled people, consider impairment groups that may be under-represented, such as people with intellectual or sensory impairments. If you belong to a single-impairment group, educate yourself about the needs of other impairment groups. This will make any group of disabled people stronger and increase the chances of working well with other groups. It is an important part of organisation-building.


2. Success Stories


World Federation of the Deaf

The World Federation of the Deaf (WFD) was established in Rome in 1951. It is one of the oldest international organisations of disabled people. The WFD works to improve the situation of deaf people in society, focusing particularly on the promotion of their human and linguistic rights.

The WFD has strongly encouraged and supported deaf people's own national organisations, especially in developing countries. Sign Language seminars and organisational training seminars co-organised by the WFD have encouraged the development of deaf organisations and Sign Language work in many developing countries. As a result, the number of the Federation's ordinary members (country members) has almost doubled in the last ten years, reaching 93 by March 1994. Most of these new members are from developing countries and the newly independent eastern European countries.

The WFD campaigns for modern approaches to deaf people and deafness. It emphasises deaf people's right to their own language, a national Sign Language, and the human rights dimension to deafness. Deaf people are increasingly regarded as a linguistic minority with a right to opportunities equal to others in their society.

The Federation shares information mainly through the WFD News, its bulletin, and other circulars. It is publishing an organisational manual on how to set up and run an organisation of deaf people.


National Union of Disabled Persons Uganda

The National Union of Disabled Persons of Uganda (NUDIPU) is a national umbrella organisation of associations of disabled people which are non-governmental, autonomous and voluntary in nature. It brings together people with all sorts of impairments. NUDIPU was formed in November 1987 when the different associations of disabled people came together to break the tradition of being divided along medical lines and resolved to work together.



NUDIPU's mission is to advocate for the equalisation of disabled people's rights and opportunities with those of other citizens in Uganda, to try to improve their quality of life in the fields of health, education and socio-economic welfare and to make sure that services developed are relevant to the needs of disabled people. This is achieved through the creation of awareness, assessment of needs, confidence-building, training, recognition, fund-raising and support to meet identified needs. This meeting of needs is achieved primarily through disabled people's own efforts, sometimes in cooperation with other relevant bodies, organisations and government departments.


Key Tasks

Creation of awareness among the general public, the government and disabled people themselves of the full potential of disabled people by: Informing, Publicising, Discussing, Sensitising


Assessment of needs

through: Interviews, Questionnaires, Consultancy, Brainstorming, Comparison, Observations





Training in the identified needs

through: Discussions, Skills Transfer, Seminars, Coaching, Workshops, Field trips


Seeking recognition

through: Self-advocacy, Publicity, Utilisation of skills


Mobilisation of resources

through: Fund-raising, Subscription, Income-generating projects


Soliciting support

through: Negotiating, Persuading


Key Goals



Membership is open to indigenous associations of disabled people with all types of impairment. Currently over 30 regional and national organisations are members of NUDIPU. As an umbrella organisation, NUDIPU does not deal directly with individuals, but can provide information and guidance on appropriate groups or associations for individuals to join. NUDIPU will also give advice on the formation of new organisations and can assist such groups to grow into fully-fledged associations.


The General Assembly is the supreme policy-making body. It appoints Executive, Trustees and Patron.

The Executive Committee makes decisions on behalf of the General Assembly and monitors the day-to-day running of the Union. It appoints the Secretariat.

The Patron advises and supports the Union, protects its rights and officiates at Union functions.

The Board of Trustees can be called on to advise the Executive Committee. The Board looks after the long-term interests of NUDIPU and also acts as caretaker of the Union's property when required.



Disabled people themselves know their own needs better than anyone else, so NUDIPU believes that they are best placed to make decisions affecting their lives. Agencies intending to work with disabled people should always build on the priorities and initiatives of those same disabled people. Only this method will help meet the real needs of the target group. All of NUDIPU's programmes are planned, managed, implemented and monitored by and for disabled people themselves.

NUDIPU was born to challenge the traditional attitudes that do not recognise the abilities of disabled people but view a disabled person as an object of pity, sympathy and charity. NUDIPU believes that the greatest disability for disabled people is other people's attitudes towards their impairments. These negative attitudes held by the general public have had the following impact on disabled people:

Loss of hope - Dormant potential - Dependency syndrome - Self-denial and self-pity

NUDIPU also believes that a disabled person has the ability to break out of this downward spiral if he or she is able to make decisions and choices about matters concerning his or her well-being.



NUDIPU emphasises its own identity first and then the free interaction with government departments, organisations for disabled people and other agencies that work for the welfare of all people.


ACOGIPRI: A Disabled Women’s Group in El Salvador

From the newsletter, With Your Voice, of 'Women of ACOGIPRI' (translated from the Spanish): "Firm in our aim, to prove our slogan, "We Can Too", we are working with determination to get rid of the taboos that marginalise us, especially through making friends with people and being strong, not through making people pity us. We have been struggling for six years to make our dreams come true We have a voice and it will not be silenced. We are women with some type of impairment, and together we will fight... We must demonstrate to those people who believe that they are "normal" that we are capable of valid lives and that we can live together with them in peace and fraternity...

In this women's group, we have much in common: being a woman with an impairment, knowing the situation of being marginalised, which affects our self-confidence. It is my desire to help other disabled women who have little or no opportunity for contact with the outside world; a world which often doesn't even acknowledge their existence.

One of the group's main activities is expressing disabled women's experiences. "Nobody takes account of the history of disabled people. We write about the various discriminatory situations that we face as disabled women. We speak up about the fact that we do not have access to education because of physical barriers and little access to employment because of barriers of attitude in society, which is used to seeing only perfect bodies. There are many women still imprisoned in their own houses wishing to get out, have friends, relationships, a family; to feel that they are useful to society.

This women's group has a clear and simple aim: to benefit disabled women through allowing them to share their experiences and gain strength.


3. Defining Development Needs


Strengths, Weaknesses, Opportunities, Threats

Throughout the life of an organisation, and before you begin any new project, you need to look at the good and bad things about the organisation and the situation it faces.


Areas to Consider

1. Structures

2. Time

3. Funding

4. Skills

5. Responsibility

6. Training

7. Information

8. Leadership

9. Legal

10. Monitoring and Evaluation

11. Change


Example of a Strength -Weaknesses-Opportunities-Threats analysis





If you consider these four aspects to the organisation before beginning a project, you can often anticipate problems before they happen.


4. Drawing Up an Action Plan


How an action plan is developed is as important as the plan itself. To work well, it must be based on the ideas and hopes of members and the best available technical knowledge and practical experience.


Option 1: "Bottom Up"

This simply means asking all members (or member organisations in the case of a larger, umbrella organisation) to describe their goals and objectives for the whole organisation (or umbrella organisation). The main themes are debated and then a mandate is given to the management committee to draw up a summary of the points made. The advantage of this option is maximum involvement of the grassroots. The disadvantage is that it may be confused, without a binding theme.

Option 2: "Top Down"

The committee develops an action plan and asks members (or member organisations) for their opinions about how they would carry it out. The advantage of this option is the best possible expertise and knowledge of past experiences in formulating the plan, with maximum coordination. The disadvantage is that it doesn't involve the grassroots members. The top down option does not promote active participation by members nor does it help to develop individuals and train the leaders of the future. It may sap motivation and create false expectations of what can be achieved by leaders.

Option 3: Combination of Options 1 and 2

This option begins with the general framework of a mission statement, goals and objectives already prepared at the "top" by the leadership. Members (or member organisations) at the "bottom", are asked to test this framework, recommend changes, propose measurable and achievable goals. A series of "thinking out loud" sessions can be held involving a mix of grassroots representatives and technical/experienced resource people to prepare a clear statement of values and aims, draw up an image of what would be desirable, suggest change and develop a strategic plan. Ask each session for three or four major action points. One of the major advantages of this method is that it is a learning experience for everyone on how to work collaboratively at all levels. It also combines the advantages of Options 1 and 2 above and reduces some of their disadvantages.


Establishing Goals and Objectives - Two Examples

N.B. These are just examples, not complete action plans.

Example 1: Organisation-Building

Let us imagine that we have chosen as an overall aim the strengthening of an international organisation of disabled people. (You could work on adapting this to the specific needs of your own organisation, whether it is local, national or regional. We can define four distinct goals which will help to bring this about. For each goal, we can define a number of clearly measurable objectives.


Goal 1:

Include all groups of disabled people who are not involved at the moment - people who get left out.


a) Include disabled women (e.g. 50 per cent) by (set target date) on executive and other bodies.

b) Include poorer disabled people.

c) Include all impairment groups, including hearing impaired, intellectually or psychiatrically impaired.

d) Include ethnic minorities, all castes, tribes, etc.


Goal 2:

Strengthen the structure of the organisation at all levels.


a) Encourage the development of self-help groups in less developed areas where they do not exist.

b) Support the continued development of self-help groups of disabled people in less developed areas where they already exist.

c) Help the development of regional resource offices.

d) Strengthen the central secretariat and development office capability.


Goal 3:

Strengthen the means of internal communication.


a) Establish working languages, and material in large print, braille and on tape.

b) Develop a regular newsletter.

c) Promote experience exchange through travel between countries, districts or villages.

d) Develop the use of modern audio-visual and telecommunications technologies to improve communication between all levels of the organisation.

e) Provide Sign Language at meetings.


Goal 4:

Promote consultation of and influence by disabled people among politicians and local authorities.


a) Speak to civil servants about representatives of your organisation taking part in discussions.

b) Explain that disabled people must help find the solutions to their own problems.


Example 2: Full Participation by Disabled People in their Community

Many organisations at all levels - local, national, regional and international - have as an overall aim the improvement of living conditions for disabled people. This is tied to a belief in "all human rights for all" and the fact that nowhere in the world do disabled people have their full human rights.


Goal 1:

Promote the adoption of laws and policies which would enable disabled people to take part in all important decisions affecting our lives and would give us protection from discrimination.


a) Talk to national government and local political representatives about equal opportunities or anti-discrimination legislation. Make legislation an election issue.

b) Change the way that disabled people are seen by the general public, through use of the media.


Goal 2:

Support disabled people's independence by promoting the availability of appropriate support services (e.g. technical aids and devices, transportation, etc.) and improving accessibility of all kinds.


a) Contact suppliers of aids and services to show them the advantages of integration.

b) Consider setting up a centre for independent living, where disabled people help each other and provide services, advocacy and advice.

c) Ask the government to consider legislation promoting integration in public services.


Goal 3:

Promote education and training opportunities which would enable disabled people to gain and keep secure, integrated employment.


a) Ask local authorities to spend money on adapting mainstream school facilities, rather than building "special" schools for disabled children.

b) Encourage parents to send their disabled children to school. Many parents want to protect their children; some see them as a burden and have very low expectations of them.

c) Encourage parents to realise disabled people can get jobs and live independent lives if they have a good education and the right support in work.


Goal 4:

Promote the development of employment opportunities for disabled people (e.g. through income generating projects).


a) Look at the skills within your group - they will be many and varied. Organisations of disabled people that generate income through using the skills of members will improve the employment prospects for those people and improve the way the whole community sees disabled people. We need to show the community that we make good employees and should be gaining jobs, first of all, in those areas that affect our lives: promoting products of use to disabled people; providing training to professionals and the general public; running services to make material, such as companies' promotional literature, accessible to disabled people.

b) Talk to employers about what good employees disabled people make. Encourage them to consider access improvements when they are repairing their premises. Make sure that government grants are spent on improving such access rather than on building sheltered workshops.



Good planning is essential if an action plan is to be carried out effectively. Planning means deciding:

  1. Where an organisation, project or plan is going - its aims.
  2. Who and What is available to help get there.
  3. How the aim will be achieved.

Very important at all stages is an understanding, by everyone taking part, of Why the aim needs to be achieved - how a particular objective is appropriate and necessary to the overall goal of promoting human rights, independence and integration for all disabled people.


5. Development


Development work is based on understanding how an organisation works and encouraging active participation of the group's members. You need to look at development in two ways:

A development worker needs to have an overview of the group and to understand the skills and needs of individual members. If you don't have a development worker, the management committee should fulfil the role. Major responsibilities include:

Some areas to consider are:


Which of the goals of your organisation are you reaching? How are they being reached? What is it about the methods that makes them work well? Is it people who work together and support each other? Good funding for projects? A lot of time and effort put in by a few people?

What things don't work so well? Why not? Is it lack of communication or funding? Is it an unreasonable goal that would be better broken up into smaller, achievable goals? Can you apply the methods of the things that work well to those that don't?


Does your record-keeping structure or method of electing officers work well? What about keeping people in touch with one another? It may not be the individuals involved but the structure that is at fault. The organisation's overall structure may need to change as the group develops. For example, grassroots involvement and how to make sure it happens is something that becomes more and more important as the group grows. Is the organisation attractive to new members, or are old members reluctant to welcome them? Does it have structures for making sure that members who have been there from the start stay interested? Are you finding ways to involve disabled people who have felt left out in the past?


Do some members and workers have skills from previous employment? People who have gained impairments as adults often had a better education than people who had impairments as children. The movement in some parts of the world has been led by these more-recently disabled people, who are often more articulate and confident. Their skills should be passed on to other members. Disabled people with a lot of experience can support others who feel unable to say what they want because they have been segregated in institutions for so long.

Although we need to make use of any skills available in an organisation, we need to be careful not to reproduce the hierarchies of the non-disabled world. Good development workers will locate people's individual skills and talents, and their potential. They will work to develop all members of an organisation, to unlock the skills and personal qualities locked away by years of oppression.

Remember, working well together means sharing ideas, skills, work and responsibilities.



An important development for any organisation is improvements to systems for problem-solving. A key role for a development worker is to bring this about. If mistakes are being made, for example because of a lack of communication, you need to look very carefully at what went wrong, how it happened and how structures can be changed to stop it happening again.

Problem-solving also includes solving problems between people, between different individuals and groups. This is a vital leadership skill.


Some Guidelines

  1. You must appear fair.
  2. Listen to each person, or group of people.
  3. Make sure you conduct negotiations in terms of differences of opinion, rather than on the basis of personal differences. This will help people reach a compromise.
  4. A group is not necessarily a unified body of people who agree on everything. This can be a strength.
  5. There may be internal struggles for domination by one individual; or a few may be left to do all the hard work for the others
  6. People are often reluctant to put themselves forward for work. They want to be asked.


6. Training


Training members is one of the most important roles of an organisation. It contributes to the development of individuals and to the democracy and development of the whole organisation. People are the central resource of any organisation. You can make that resource grow by recruiting new members and by increasing the skills and participation of existing members.

Training isn't always formal, through workshops or courses. It can happen through involvement in any aspect of a project.

An important decision for formal training is who is to be trained. Is training an individual better than training a whole group? Who will benefit?

Knowledge is power, but power must be shared.

Questions to be Asked by Trainers

How things are done may be more important than what is done.


Trainer’s Check List


Assessment and Action


You should be clear on these things before you commit resources to training. Answers to improving an organisation's efficiency may lie elsewhere. You also need to distinguish between present and future training needs. Current needs are due to things not working well at the moment. To solve these problems, change will be needed. Future needs will arise as a result of change.

Training should be directed towards a specific goal. It should involve full participation by trainees and regular reviews of how well the training is working.

Training in groups allows the people taking part to look at themselves and how they work as individuals and as part of a group.

Always include time for evaluation of how a particular training session has worked, what the results were, what the trainees thought of the training and what they got out of it.


Learning from Mistakes

Whenever something has clearly gone wrong, rather than giving blame to individuals, encourage everyone to look at the structures of the organisation and what has gone wrong.

Example 1

Perhaps Member A always offers to do something and then doesn't manage it. Don't be cross with Member A. Look at structures for change. Give the work to Member A to share with Member B, who is more likely to do it. It may be that Member A wants to do the work but does not know how to do it and needs help.

Example 2

Member C and Member D always argue in committee meetings and contradict each other. Don't just shout at them but insist that all speakers should talk to the Chairperson, in the order the Chair chooses. The Chair can control who speaks when and can stop arguments developing.

  1. What has gone wrong?
  2. Why did it go wrong?
  3. Could it have been avoided within the current set-up of the organisation?
  4. How can things be changed to prevent it happening again?
  5. What action or training needs to be taken? By whom?


Training Model

Participant (the person taking part) does, hears, sees or says something that aids the development of the individual and the group.

Participant uses the experience and skills gained in a practical way.

Participant develops rules to work by from experience and observation.

Participant shares their reactions and observations with others.


7. Leadership Training


Leadership should not be tied to one person, though it is usually thought of in that way. Leadership is necessary to keep the direction of an organisation and the goals of its activities clear, and to try to reach the goals by using and developing the resources of the organisation in the best possible way. If leadership rests with only one person, the organisation becomes too dependent on that one person.

An ideal situation within a group would be that everyone takes responsibility for the function of leadership. That is only possible in very small organisations. In most cases, as a group grows, there is a group of people with the special task of watching over the leadership function. This is generally the management committee. Taking an officer role can help people learn leadership qualities. It is better that they do not stay as leaders for too long to allow others a chance.


What Good Leadership Means

Leadership styles taken on by organisations of disabled people must follow the goals of the organisation: to improve disabled people's image of themselves individually and collectively, without detracting from others, and to enable them to press for their rights without fear.

As a leader in an organisation, you of course have to know the aims of the organisation but you must also understand the reasons for those aims. You need to ask yourself frequently: "Why does our organisation exist? Are my actions and decisions fulfilling that purpose?"

One of the most important tasks of the leadership group is to communicate the aims of the organisation: to try to get as many members as possible to share the organisation's values and understand the aims of its activities. Remember, however, that those aims should also come from the group itself, not be imposed by the leadership.


Good Leadership Qualities

Good Communication



A successful leader gives responsibilities to members, creating new possibilities to find solutions to problems.



The best way to appreciate people is to show genuine interest in what they do.



The leadership must accept and fulfil its role as evaluator and educator.


To summarise, for good leadership:



Once a decision has been made, it must be communicated to everyone to ensure that everyone knows how to carry it out. Communication must be effective so that people at all levels are informed and involved. Communication, as well as knowledge, is power. Good communication is essential if power is to be shared.


Training Tomorrow’s Leaders

One reason that many disabled people's organisations grow weak is because their leadership has had no training. It is important for the leaders of any organisation to gain basic knowledge of cooperation and teamwork, programme planning, calling and running meetings and ways of working effectively through committees. Once this knowledge is available within the organisation, it needs to be shared widely, so that the group will have new leaders in the years to come.

One way to do this is to start "human resource" development workshops and "leadership improvement" seminars to help mobilise the resources and expertise available in the community. Leadership training seminars mean that leadership emerges and develops, rather than allowing the existing leadership to stay in positions of permanent power, putting the grassroots membership in a position of permanent dependence. A membership that challenges and changes its leadership can be a sign of a very well-run organisation.

Leaders themselves need to be trained to listen rather than just to speak. Organisations need to have channels of communication with their members that allow everyone to take part in decision-making processes. The training policy should create ways of teaching members the principles of management by participation and consensus.


Secondment or Exchanges

Secondment is a good way of developing an organisation, by allowing a staff-member to spend time in another organisation, or by bringing in someone with specific skills to train members within the organisation. It is important that secondment should benefit all members of the organisation not just the person who visits the other organisation or the people who work with the outsider.


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