© Independent Living Institute
Independent Living Institute,
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123 47 Farsta
Tel. 08-506 22 179
Disability Awareness in Action
Resource Kit No. 4
Download the "Organisation Building Kit" as a PDF file (135 KB)
1. Progress of a Social Movement
Isolation - Solidarity - Struggle
Stage One: Disabled people are often isolated from each other and the world: locked in institutions, segregated by inaccessible housing, hidden away by families who are ashamed and frightened of them. They have no money, no power, often no way of moving about or communicating with each other.
Stage Two: Sometimes as a result of being managed in groups by medical and rehabilitation professionals, and sometimes due to families of disabled people forming organisations, groups of people with the same or similar impairments begin to come together. They talk about what their lives are like. They realise that they are not alone, that they share the same problems and, with the confidence that comes from supporting one another, they begin to see that things can change. They form their own organisations to make sure the services that they need are available.
Stage Three: Disabled people with different impairments realise how some of their experiences are similar. As a result, many disabled people realise that their problems are not just because of their individual impairments but because of non-disabled people's fear and superstition, and the fact that society itself has been organised as if disabled people didn't exist. Some organisations are formed for specific issues, such as income generation, access or independent living. These organisations often have people with different impairments as members.
Stage Four: The single impairment and the 'issue' organisations join together to campaign to change attitudes, laws, policies and services. They use their votes and any money that they and their friends or relatives have to put pressure on politicians and business people to make changes. They use their bodies, their voices, their hands or their feet, to show the world who they are and what they can do - by being out on the streets, stopping traffic, writing letters, singing, shouting, dancing.
Stage Five: Change comes quite rapidly. The community is more aware of disabled people, sees them on the streets, at work, on television. Programmes and policies change and legislation is passed in some countries. Technology advances and mobility, access and information improve. Many preventable diseases disappear. In some parts of the world, life expectancy and general health for disabled people also improve. Disability becomes a human rights issue.
Stage Six: Despite positive changes, there are still problems and new dangers. Disabled people everywhere are still the poorest group; the most vulnerable to violence in all its forms. The search for cures for impairments means that some non-disabled people seem to think there need be no more disabled people at all. 'Genetic engineering' (looking at and changing what human beings are made of and the way their bodies and minds work) means that 'eugenics' - "purifying the race" - comes back into fashion. Examples include aborting foetuses that may have impairments, letting disabled babies die, euthanasia for severely disabled people. With increased life expectancy, there are more older disabled people, who are segregated in institutions or their own homes.
Stage Seven: The future?: the worldwide disability movement grows in strength. More and more disabled people free themselves from despair and segregation and decide to work together in local groups and at the national, regional and international levels. They look at the ways their groups are organised and make improvements to draw in more disabled people and to improve systems of communication among members and with the wider community. As a result, more non-disabled allies understand that disability is a human rights issue and add their support.
Using Our History
On this page and the next are two ways of looking at disabled people's history and development.
The first looks at policy phases - how disabled people's lives have been managed by other people; how this is changing as we begin to take control of our own lives.
The second looks at how the ways in which society as a whole has been organised have affected disabled people. These phases may correspond to different dates in the histories of different countries.
Our history is a useful starting-point for discussion. We must learn and think about the past, however painful it is. We can't change what has happened but we can use what we learn to shape the future.
I. Policy Phases
- how disabled people's lives have been managed by others, particularly doctors, rehabilitation experts and social services:
- how disabled people can manage their own lives:
Independent self-determined living becomes a reality because of:
II. Historical Phases
- the different situations in which disabled people have found themselves over the years:
Phase 1: In some places this phase ended a long time ago. In others it is more recent.
What sort of society?
Agricultural/rural society. People work the land and produce some goods in their own homes for barter. Disabled people often take some part in this.
Where are disabled people?
Part of family/society. Though sometimes hidden away from the rest of the community, many work and are accepted. People with severe impairments do not survive.
How are they seen by
As a natural part of society.
Who controls disabled
Where does food come from?
Income from family/work
How is disability thought
Myth/stigma defines place in the natural order. Some religions and cultures believe impairments are because of family sins. Many say it is virtuous to care for disabled people.
Phase 2: in most places this is the phase we are now in and fighting to change.
What sort of society?
Industrial/urban society. People's work is not just to grow food for themselves and their family. They move to cities and begin to use new, sometimes dangerous machinery. Community and family structures break down. How much people are 'worth' means how much they produce for an employer in return for wages.
Where are disabled people?
Segregation/institutionalisation. Disabled people are no longer part of society. They often cannot get work. Since all their family is at work, they are segregated at home or in the new charitable/religious institutions. Others are beggars.
How are they seen by
"Useless eaters". Since disabled people seem to have no economic value, some think they have no value at all. Many thousands are sterilised or killed.
Who controls their lives?
Government/professional/charity/family control. Government policies ignore or segregate. Professionals and charitable organisations make all the decisions. Families often believe this is "for the best".
Where does the money come
Charities - patronage/dependence.
How is disability thought
Medical model of disability. Because of impairments, disabled people cannot work or run their own lives.
Phase 3: A few countries are like this. Others may be like this in a few years.
What sort of society?
Rise of technology. Increased communication and independence chances and employment choices.
Where are disabled people?
Integrated in the community. Through independent living or community-based rehabilitation.
How are they seen by
Disabled person. With skills, needs, rights and votes.
Who controls their lives?
Control by disabled people.
Where does the money come
Right to a decent income. Through employment, benefits.
How is disability thought
Social model of disability. Disabled people face social barriers that stop them taking part. Everyone would benefit from removal of these barriers. Disability is a human rights issue.
Why Start an Organisation?
There are groups of people in every society who do not achieve all that they could because of a history of being considered as inferior members of that society - because they are women, workers, indigenous people or gay and lesbian people; because of their race, religion or culture. For hundreds of years, groups of people with something in common have come together, to strengthen their sense of identity and to improve their situation in the local community, in their country, in the world.
Disabled people have the same needs and rights as non-disabled people. These include a social life, education, food and money, dignity and respect, access to community services, access to specialist services, forming relationships, sexuality, having a family. We have always had decisions about these things made for us by other people; we have always had other people speaking for us. This has to change and together we can make it change.
Increasingly in the last twenty years, disabled people all over the world have come to realise that they need to develop their skills to be all that they can be; that they must begin to make decisions and take control of their lives.
Doing things alone doesnt always work. No one has oil the answers. Being a member of a small group of disabled people, talking about experiences and developing respect and support for each other is a good step towards self-respect and independence. Only when we have a strong sense of ourselves as a group can we begin to do something bout societys negative view of us.
Finding the First Members
Find two or three disabled people and talk about what matters to you and what you have in common. Each of you may be able to bring in someone else.
Ask to contact disabled people through your local health centre, rehabilitation workers, community development workers, field representatives of non-governmental organisations. Stop them in the street if necessary! visit day centres and the sites of local festivals and market days. Talk to your local newspaper, community radio station, local government, religious and community organisations. Ask them for help in making contact with other disabled people. There may be schools and homes for disabled people and sheltered workshops in the area that you can contact. You could write a news sheet about your ideas and get the support of business sponsors to print and distribute it.
Once you know where disabled people are, go out and talk to them and their families. Discuss the problems disabled people in your area face and your ideas for the future. Families of disabled people can play a very important role. They need to be encouraged to help their disabled relatives to attend meetings and take part.
As long as you have at least two or three interested people, you can share out the workload and encourage others to take on different responsibilities.
Good ways of finding new members are important throughout the life of an organisation. It requires a lot of time and effort but it is the first step in development ad keeps groups alive.
The First Public Meeting
The core group of four or five people needs to organise a small public meeting for disabled people and their families in the area. The aims of this first meeting are:
Remember to pick a time and date when people are likely to be able to come along. Where will you hold the meeting? Can you hold it outside if the weather is good? Many groups when they first start meet in someone's house. Sometimes you can ask people who own or run community centres, village halls or church buildings to let you use their premises for free. Make sure disabled people can get to, and get into, the place you choose.
The major problems for everybody trying to organise a meeting are how to get people there, finding the right place to meet and making sure that everything that happens can be understood by everybody
Can non-disabled supporters, families of disabled people, and other disabled people help provide transport to the meeting for people who can't use public transport?
Arrange for Sign Language interpreters and personal assistants. Make sure anything written down is read to blind people or available on tape or in braille. Approach your supporters for volunteers to help in taking notes for those who do not understand Sign Language or cannot write down their own notes.
or Forming a Self-Help Organisation
Why We Have to Be in Charge
For far too long, non-disabled people have made decisions about our lives. In the last few decades, disabled people have found the strength and confidence to say: "We need to speak for ourselves, make decisions about our lives, because we are the experts when it comes to disability." By forming organisations, we show that we are not people to be pitied but people with rights, skills and duties who demand a place within our community, not banished to the edges of it. By working together for the good of a group, we show that we can run things and take charge of our own lives.
Self-Determination & Independent Living: Choices & Rights
Independent Living means:
Independent living isn't about living on your own and doing everything for yourself. It is about 'self-determination': having control over what happens to you. It is having the right and the opportunity to follow a course of action by choice. And it is about having the freedom to fail - and to learn from your failures - just as non-disabled people do. Whatever the severity of someone's impairment (this includes intellectual impairments or learning difficulties) independent living means having every chance to make decisions and to be as self-sufficient as possible.
Barriers to independent living include lack of accessible environments, housing, education and employment; lack of recognition and respect for Sign Language; lack of accessible information; non-disabled people's misunderstanding and prejudices about impairments; institutionalisation and inflexible service provision. To have independent lives, disabled people have to overcome these barriers. This has most often been achieved by working together, finding our own solutions to our problems.
First you have to decide the organisation's basic aims and guiding principles. This should involve everyone who wants to take part. (As the membership grows, there may be different or more things to aim for.) Ask people for their ideas and hold a meeting to encourage discussion.
Examples of Short-Term Aims
One major aim of an organisation of disabled people is developing the skills and confidence of its members. This is achieved through building a sense of solidarity, by members taking part in the group's activities and by improving the status of disabled people within the community.
Examples of Long-Term
A major aim of any organisation of disabled people is to overcome discrimination against disabled people. Within the organisation and the general community, members work for the equal rights and participation of all disadvantaged people. Stronger members must not discount those who do not think as quickly or speak as loudly or fluently as themselves.
Having recognised our own discrimination, we must not discriminate against others. Disabled people cannot gain true self-determination in the wider community if they oppress other people in order to do so. See Chapter 23 for some more ideas on this.
Organisations of disabled people are formed when a group decides that there are barriers to disabled people taking part in society that need to be removed. These organisations are based on the needs of the disabled community, who must be directly involved in decisions affecting the group.
An organisation of disabled people is a people's organisation. It has no need for great bureaucracies, huge numbers of offices and different departments. In that case, it would be taken over and run by the staff in the way that service organisations are. There would be a wide gulf between the leadership and the grassroots members. In a self-help organisation, staff are just people who carry out the wishes of the people who make up the group. This is often organised through committees made up of members.
Disabled people cannot achieve full participation and equality of opportunity in a world of organised charity and pity. We need human rights - economic, social, cultural, civil and political rights. We must know them, demand them and defend them. (DAA has included some human rights documents in its Resource Kit 2: Consultation and Influence. Please contact us if you do not have a copy.)
Development, Liberation, Empowerment: Change
Used in the context of poverty, discrimination, superstition and fear, the word development can be interpreted as liberation (becoming free) and empowerment. As this affects disabled people, it includes freedom from community and institutional oppression, as well as from hunger and poverty, and empowerment to use the rights and gain the skills and confidence to make choices that affect our lives. People can only liberate, empower or develop themselves if they are able to understand the things that discriminate against or oppress them. People will use different words and different ways of expressing what these things are. A very important part of developing an organisation is encouraging individual members to identify for themselves the things that need changing.
Looking at Needs in a Wider Context
At certain times in history, social, economic and political change seems to happen almost overnight. Since the late 1980s, in many parts of the world, there has been an enormous amount of very rapid change. These changes in the wider society can provide opportunities for improvements for disabled people and new difficulties. When planning activities for a group, we need to think what will be useful to the biggest number of disabled people in the long-term.
Think about what you want to achieve. The methods you use must uphold the dignity and rights of disabled people, to show us as active members of our communities; otherwise the solutions may become new problems. Here are some examples:
1. We have a right to food/money the same as everyone else
How are we going to get it?
2. We have a right to be educated and to work alongside everyone else
How are we going to bring this about?
3. We have the right to form good relationships with disabled and non-disabled people
What are we going to do to make sure we have this right?
There is an old saying which is as true as it is old. If you give someone a fish, you feed them for a day. If you give them a fishing rod you feed them for a lifetime. When we think about what we want to achieve as disabled people, we have to think through whether we have chosen aims and methods of achieving those aims that promote our full integration, equalisation of opportunities and human rights. Sometimes this will mean choosing a long-term aim, which will be more difficult to achieve, rather than a short-term aim which might delay independence and rights.
As an organisation grows, it is useful to have policy statements, based on what people in the group want, which can be used to help draw up action plans on particular issues.
Many organisations have a central, simple and direct policy statement, which is often used in publicity materials, on writing paper, even as the group's name. Examples include: "Equal opportunity and full participation for all people with disabilities in all aspects of New Zealand society" (Disabled Persons Assembly (New Zealand) Inc.), "Access for All" and "Rights not Charity".
Organisations often also have longer documents about particular things. It is useful to have a record of the group's opinions. Examples include:
It might seem quite a big task to decide policies on these things. You need to arrange group discussions, so that everyone takes part and has a chance to say what they think. Then ask someone to write a draft policy document, which everyone can talk about before the final document is written. Policy documents are very useful to the development of organisations - they show what needs to be achieved inside and outside the organisation.
A. Draw up a policy document on equal opportunities by asking all members to comment: define ideals.
B. Examine current situation: what are things like now?
C. Create an action plan: what needs to be done to bring B closer to A; to put policy into practice?
A. What sort of public transport would disabled people like to see in the community?
B. What is public transport like now?
C. What changes need to be made to turn B into A? How can we turn policy into practice?
Once you have a policy document on something important, you can begin using it to ask for change in the community by sending a copy to your local authority or to other people who have power in your area. Ask someone to come and listen to what the members of your group have to say.
5. Principles for Equality & Growth
Whether they are income-generating schemes, service-providers, campaigning organisations or all three, most organisations of disabled people are concerned with dignity, justice, equality and full participation for all disabled people.
It is useful to think about and discuss a few general principles which should apply to all programmes and policies throughout the organisation.
The organisation, its services, programmes and policies should be for the benefit of all disabled people, or, for some programmes, a clearly defined group (such as women members or people with particular impairments). It must meet the stated aims and must be accountable for its actions and the use of funds to members, fulfilling any legal needs.
The organisation, its services, the place it meets, its programmes and materials should be available to all its target group of disabled people, where and when they want them.
The organisation and its programmes should be controlled by disabled people themselves.
The organisation should be based on the idea of rights, not charity. In some countries, you may have to become a 'charity' for legal reasons - this should not interfere with the organisation's 'rights' issues.
The organisation should be flexible, to meet the changing needs and demands of disabled people.
The organisation should promote a positive public image of disabled people and the organisation.
The organisation's activities should aim to encourage and enable disabled people to live integrated lives in their community.
Monitoring and Evaluation
The organisation should include a good monitoring and evaluation system, which will help to make sure it works well and is accountable.
The organisation should help members to take part in the life of their community, and should encourage a sense of independence, self-esteem and solidarity.
Who Can Join
Organisations of disabled people are usually defined as those controlled by a majority of disabled people (at least 51 per cent) at both the board and membership levels.
If disabled people are not in the majority, they cannot control the policies and decision-making. We become disempowered recipients of other people's solutions to our problems.
Some organisations do have relatives or other supporters of disabled people as members. Their impact is valuable and can support the views of disabled people themselves - but it is disabled people who must be in the majority and in control.
Remember that everyone has the right and the ability to make choices. Those who feel they represent the interests of people with severe intellectual impairments can best empower, liberate and develop them by letting them take an active part in the programmes and policy-making activities of the organisation: allowing them to express what they want and what they think, then acting on that rather than deciding what is "for the best".
In some organisations, the workforce, paid or unpaid, are members, though they cannot also be on the management committee. Membership helps someone feel they belong and may make people act more responsibly. Think about the good effects of having disabled people, with the right support, in salaried posts. Organisations should be providing disabled people with good role models.
The Committee of Management should always have a majority of disabled people. A rule about this should appear in the by-laws.
Annual General Meetings
At an annual general meeting (AGM), you can vote for the management committee or board and officer posts. You can maintain contacts between members, run workshops and seminars to educate and inform them and to discuss particular issues of concern to the main aims of your organisation.
Organisations of disabled people are usually covered by the same general laws that apply to all cooperative organisations. Find out about registering your organisation and any regulations on trusteeship and charitable status in your country.
General Membership Participation
Among other things, involvement of grassroots members includes:
The management committee is elected by the general membership to formulate policy. Officers of the management committee are elected to carry out specific areas of the committee's responsibilities.
1. Name of the Organisation
This is very important. You want to establish a group identity and give an idea of what your organisation stands for. Try to make it short and memorable.
2. Aims and Objectives (see Chapter 3)
3. Membership of the Organisation (see Chapter 6)
Who is eligible to join?
disabled people only? How many? What proportion of the total membership?
non-disabled workers, representatives, relatives, friends? What proportion of the total?
4. Office Holders
Terms of office - length of service, responsibilities, etc.
Means of election
5. The Management Committee
6. General Meetings
Frequency of meetings (this depends on whether you are a local, national or regional organisation) An annual general meeting should be held once a year.
7. Organisation Funds
Disbanding of the Organisation
How are funds and property to be distributed?
What is Accountability? - Accountability means responsibility
The first step in making an organisation accountable is agreeing what it expects of its members, elected officials, paid and unpaid staff. These agreements must be written down in the constitution, by-laws and policies of the organisation. They set out the responsibilities and authority of each position, the limit to that authority and when it can be used.
In theory, each elected official and paid and unpaid staff member should be accountable to members for their day-to-day work. In practice this is impossible. Imagine if every phone call, letter or decision had to be approved by every member of the organisation! What usually happens is that members elect their representatives to the board of management at annual general meetings and these representatives run the organisation on behalf of its members.
The key to accountability is good communication at all levels and support for those who need it most - those with difficult jobs to do. A clear understanding of the policies of the organisation and the responsibility of each member is also very important. Willingness to listen to what other people say, making sure discussions are about issues and not personal differences, respect for the decisions of the majority all contribute to good organisational accountability.
Example of Organisation Structure - National
The Philippine National Organisation of Disabled Persons:
Two-year term of office.
Elected by General Assembly.
Committees: Women's Issues, Human Rights, Independent Living, Education, Employment, Transport, Housing.
Regional Councils send members to National Council
Provincial Associations (13)
Presidents of Provincial Chapters belonging to that region.
Note: designated number of representatives to the Council is three during a congress.
Two-year term of office.
Elected officers by region.
President, Vice-President, Treasurer, Secretary, Auditor, Directors.
Minimum of 15 members.
Age - 21 years old, up to 60 years old.
Working or has some source of income.
Elected by Association.
Example of Organisation Structure - Local
A Disabled Women's Group in Zimbabwe:
Aim: to get a mill to grind corn.