9
	Fostering the Formation of 
	Parents' Associations

	Pål Skogmo

In this chapter, I will draw on the experiences of my organisation - the Norwegian Association for the Mentally Handicapped  (NFPU) which was formed in 1967,  and on other experiences of working with our partners in developing countries which began in 1981. 
	The reader should bear in mind that the content of the chapter is based on a limited scope of experiences and that the approach for mobilising parents of disabled children cannot be uniform. It will differ from country to country, from district to district.  It will vary according to religion, tribe and social class.
	The most important message I want to get across, is that some form of organised grouping of parents, is a very important element in any work to improve the human rights situation for disabled children as well as adults.  Too often mental disabilities bars them from effective self-advocacy.  I will try to show some of the pitfalls in parent empowerment work; how it must be an integral part of the difficult field of organisational development, and I will share some visions for the future.  As our experience is from associations of parents with children with mental handicap, I will mainly discuss this type of parents' association.  

The Norwegian Experience of Parental Empowerment
I am looking forward to the day when it is no longer necessary to ask the question: 'why is parent empowerment important?'  Advocacy organisations of the physically handicapped, the blind and the deaf are making their voices heard in more and more corners of the world.  The voice is dwindling of charitable organisations and other organisations for the disabled, who in a way insist that, 'we know your problem better than you do'.
	But the voice of parents' associations for persons with mental handicap is still very weak.  Associations are there, but not so many with parents in the front seat.  The professionals are very often in full control, helped by the myths and mystery surrounding mental handicap.  Even if the long term goal is to ensure the highest possible degree of self-advocacy for people with mental handicap, a parents' association is still the closest you can get to an "of" organisation for this disability group.
	We know that strong forces have been, and will continue to be opposed to the growth of active parent movements. You will find opposition among politicians, who wish they could be left alone to set their budget priorities, without having to cope with another pressure group.  You will also find opposition among professionals, who wish they could be left alone to handle persons with mental handicap the way they feel is the right way to handle them.
	In the 1950s, the Norwegian Government developed a policy towards persons with mental handicap which would result in a handful of large institutions providing life-long institutional care for everybody in Norway with a mental handicap.  Big units would be more efficient, and efficiency was the main concern of the government at the time.   
	The Norwegian professionals were also in favour of this ideology, as it would give them better opportunities for specialisation and research, and they would have a bigger professional environment; in general, better working conditions.
	So why has Norway shifted from an ideology of locking up thousands of people with mental handicap in massive institutions, to a totally opposite ideology where individual freedom is the top priority, and where such persons are secured private flats in their home community?  The answer is simply: parent empowerment.
	Individual parents with children in these huge institutions started asking questions: 'Is this really the best life for my child?'.  They came together in parents groups, and learned that other parents had the same doubts about what they were often told by professionals: 'leave this child in an institution, forget it and have another baby'.
	In groups, the parents started questioning the professionals and the politicians, and they realised the role they themselves had to play to secure a better life for their children.  The parents posed a real challenge to the professionals and the politicians when different parents groups came together to form a national organisation (NFPU) in 1967.
	Since its foundation, NFPU has had one prime aim: the normalisation of the lives of children and adults with mental handicap.  A major step was taken in the early 1990's, when the National Reform for Persons with Mental Handicap was introduced. The reform plan states that normalisation is based on the belief that all individuals should have the right to be included in their home communities and that each individual should be supported to have, as much as possible, a life cycle of activities and rhythms appropriate to one's age and culture.
	In the Norwegian context, this means that children should get the necessary support to allow them to live at home with their families and to attend kindergarten and public schools in the local neighbourhood.  As adults, the support should enable them to have their own home and some kind of paid employment. Normalisation also includes the possibility of taking part in cultural and leisure time activities.
	Numerous studies show that the life situation of persons with mental handicap has been improved considerably over the last couple of years.  There is also no question that without the persistent struggle of the national parents association, the National Reform would not have taken place, at least not for many years.
	Twenty-five years ago the situation for persons with mental handicap in Norway was pathetic in comparison with other disability groups.  Today, persons with mental handicap are setting the standard to which other disability groups are striving.

Our International Experiences
But Norway is Norway and Tanzania is Tanzania.  Why do we think that what is right in Norway, is also right in Tanzania?  Is it not one of the unfortunate experiences of several decades of international development work, the simple fact that experiences which are relevant in the North, can be totally irrelevant in the South?
	We have had a variety of experiences during 13 years of partnership work in developing countries.  We count more setbacks than achievements; more frustrations than shining examples.  But we have never had any reason to doubt what is the most important issue in our work; it is, and will always be, parent empowerment.  
	When the overall objective is to safeguard the human rights of persons with mental handicap, the best foundation to build on is the parents and other family members.  Hence the key goal is to empower them and help them to understand that they have a role to play, as individuals, as a group, as a parents' association. 
	The economic, cultural and social conditions will differ, and so will the type of achievements that a parents' association can reach.  But it is a tool that must never be overlooked in serious development work for disabled children.

Empowerment is a Process
'Outside forces' cannot empower parents of disabled children. Empowerment is a process which the individual parent has to go through, starting with how to gain more knowledge in meeting  the needs of their own child in the home situation.  Equally at the other end of the line is a parent who fights for the rights of all persons with mental handicap through a strong national parents organisation.
	What an outsider can do, is to try and help to create a  situation where parent empowerment can take place, both the basic empowerment on individual and local group basis, as well as empowerment through a national organisation.
	The situation for people with mental handicap and their families will differ a lot from country to country, as well as within the same country. The picture is not just black and white; it has many different shades and colours. But there are some features that seem to be overwhelmingly present:

•	The parents have limited knowledge about mental handicap and the situation of their child.

•	The  mother is normally blamed for having given birth to a baby with mental handicap.  

•	The reaction from the surrounding community is so negative that parents will prefer to hide their child.
	
These are issues you have to address in the process of parent empowerment.  That is why this work is so important and so difficult.

Challenging Community Attitudes  When we say that the parents have limited knowledge about mental handicap, we are not totally biased towards Western concepts of knowledge.  We recognise that communities in all parts of the world have been coping with mentally handicapped citizens in their midst from time immemorial.  They have gained experience which has resulted in traditional knowledge, relevant to that particular community.  The problem is however, that this traditional knowledge can lead  to actions from the family and the surrounding community which do not safeguard the human rights of the person with mental handicap.  On the contrary, traditional knowledge will quite often result in very serious violations of their human rights, in some cases to the extent that they are denied the right to life (see Chapter 4).
	I think it is fair to say that most Northerners, involved in this kind of work in the South, have in a way tried to jump directly to Western knowledge about mental handicap, without taking fully into account the knowledge people actually have.  Local professionals, trained in the same school of thought, have also been quick to dismiss the traditional knowledge.  For the educated elite in towns, it is perhaps possible to jump like that, but for the vast majority of the poorer and less educated parents, you will never counter their misconceptions by lectures alone.
	How to bridge this gap, between traditional and "modern" knowledge, is one of the challenges I will pose to you the reader.  Maybe you could be in a position to try to create a forum where the traditional knowledge can be brought out in the open, and where parents themselves can search for ways of conveying appropriate knowledge about mental handicap to parents in ways that make sense to local people.

The Mother is Blamed   If we move on to the question of 'who's to blame for the disability', the universal answers is the mother!  As far as I know, it is very rare that the traditional knowledge on mental handicap imputes the husband with any responsibility.  It is the mother who has done something wrong, or it is something that "runs in her family".
	The implications, when we talk about parent empowerment, are serious. The worst result is quite often that the family becomes a one-parent family; the husband simply takes off.  And even if husbands remain, many take lightly their responsibilities for maintaining the family.  Obviously life becomes much more difficult when the mother has to carry the responsibility for their children alone.  For the child with mental handicap, the result will normally be that the mother has less time and less money to meet their needs.
	Consequently,  the overall objective of our work - to safeguard the human rights of persons with mental handicap -  becomes so much more difficult when husbands are allowed to continue to blame the wife, and to run away from their responsibilities.  Again, there is no uniform solution to the problem, the challenge is to find the best way to deal with it in your particular cultural and social setting.

Negative Reactions from the Community   The third issue, which is closely linked to the previous two, is the negative reaction from the surrounding community that can lead to the unfortunate situation where many children with severe disabilities are kept hidden.  
	This occurs in all countries around the world and is in fact a very natural reaction from the parents faced as they often are with a lack of correct knowledge about the causes of mental handicap and the potential for neighbours to make mainly negative references to the parents, in particular the mother.  Little wonder parents try to avoid their neighbours knowing about their disabled son or daughter.

Breaking Barriers is Possible
Is it not naive to think it is possible to break these massive barriers against empowerment of parents with a child who has a mental handicap?   We believe that barriers CAN be broken because we have seen it happen.   We know of mothers, in very difficult situations, who have gained the courage to come out in the open with their child and face the negative attitudes of the surrounding community with their head high.  We have seen groups build up more strength in the collaboration with other parents in a similar situation and becoming active members of our partner associations.   And we have seen fathers, who have realised that it was totally wrong to blame the wife and dismiss the mentally handicapped child; fathers who are now actively campaigning to make other fathers realise their wrongdoing.
	But these empowered parents are still very few in number. How do we reach the other millions and millions of parents out there? The way we see it, it has to be a parent-to-parent process. Professionals and well-wishers can bring important contributions to this work.  But when it comes to communication,  the most efficient communicator is often one who is more or less in the same situation as yourself, but has gained a little more knowledge than you have.
	We therefore have a vision about a network of parents, in which parents can learn a little more, move a small step forward and carry their knowledge on to other parents in the network.  A network where one father can convince another father that he should stand by his responsibility as a father and not run away. 
	It is so important to remember that what can seem to be a small achievement in terms of parent empowerment, can mean a world of difference for the main person on the agenda, the boy or girl, man or women with mental handicap.  If a parent manages to give one other parent the support he/she needs to bring the child out of hiding, this could mean giving that child a totally new life.

From Parent Groups to Advocacy Organisations
Parental empowerment must not end with the mobilisation of individual parents or the setting up of local parents' groups.  It has to go beyond localities into a national advocacy organisation, which can make the voice of the people with mental handicap and of their parents heard in 'the halls of power'.
	We Norwegians come from a country where membership of all kinds of organisations have played, and still are playing, a crucial role in shaping our society.  We are therefore surprised and frustrated when our message about the importance of organisations does not get across.  To us it is so obvious that you have to come together in an organisation to fight for your rights.  But in societies and cultures where the western system of advocacy organisations is totally alien, this is not so obvious.
	The challenges faced in this work can be divided into two major groups:

•	How do we help the group to function as an organisation?  This involves recruiting and maintaining a membership basis, having committees and an organisational structure that can work and the setting up of appropriate administrative procedures.

•	How do we help the organisation to fulfil its objective?  This includes working to safeguard the human rights of people with mental handicap; doing efficient advocacy work with  the government and providing support and encouragement for parents who have children with mental handicap.

The experience of NFPU, and I think the experience of many organisations in this field, is that too much time, money and energy are spent on the first challenge, leaving limited resources to help the organisation fulfil its objective. Unfortunately, we cannot say that good organisations are in place.  In our partnership programmes we still have to focus strongly on the very practical side of organisational development.
	I will only deal with a few issues in the vast field of organisational development. From our experience, there are some areas of particular concern, irrespective of whether you are an 'insider' or an 'outsider' in the struggle to make a parents' association work.

Motives are Important
I will start with a sensitive, but important point: 'what are the motives of those who are actively involved in the organisation?'.
	In Norway we have a saying that you have to examine someone's 'heart and kidney' to find out the motives of a person. In most cases we do not have to go into such delicate examinations to see the motive behind the involvement.  It is not too difficult to notice when money and status are more important than a genuine interest in the work for persons with mental handicap.
	In a world of international donor agencies, you must also have recipients.  The establishment of Non-Governmental Organisations (NGOs) has become the fastest growing 'business'  in some developing countries.  Enterprising people will sit and consider: 'should I start a business, or should I set up an NGO?'  They will look at which areas of development are 'in fashion' with the donors and design an NGO to fit with the fashion.
	I am not saying that it is wrong to be enterprising, but if the prime objective of an organisation becomes the provision of income for a number of people, then the 'real' objectives automatically takes a back-seat position. 
	In some societies, a position on the Board of a humanitarian organisation can add to your status in the society.  Hence an organisation working for persons with mental handicap is likely to attract such status seekers.  Many such people may end up doing a good job once they are inside the organisation and they become committed to its cause, but there is always a risk of ending up with a chairman who spends more time on announcing the fact that he is the head of this organisation, than the time he spends on actually working for the organisation.
	Money is a difficult issue in any organisation, whatever the true motives of the organisation.  In most countries of Africa, the economic situation is going from bad to worse and for more and more people the struggle for survival overshadows most other aspects of life.  It is understandable that people in an increasingly difficult economic situation, start looking at the organisation as an additional source of income. 
	It may be understandable but it certainly not acceptable.  The  result of their action inevitably will be that the ability of the organisation to work for the interests of people with mental handicap is reduced.  And for all of us who believe it worthwhile to fight for a better life for people with mental handicap, we are undermining all our efforts if we close our eyes to corruption.

Financial Control through Democracy
Many attempts have been made to establish systems for sound financial management in organisations.  Leaving accounting technicalities aside, we see proper democracy in the organisation as the best guarantee against serious misuse of funds.  You have a greater risk of misuse of funds if you have a totalitarian leader, who treats the organisation as his own property, or if you have a very powerful administrative headquarters which controls all affairs and keeps information away from the members.
	If the members of the organisation are mobilised, and there is a proper organisational structure which gives the members a chance to have influence and control over the activities of the organisation, they will not allow their leaders to use funds in a way that does not benefit the organisation.  If an organisation has strong local branches, the members will demand transparency in money matters and they will not keep quiet if the leaders divert money away from the branches.

Struggles for Power
So who are the people who are more likely to have the right motives for setting up and running an association for persons with mental handicap?  It is probably not very surprising that we see the answer in parents who are mobilised and empowered from the grass-roots.
	A fundamental idea of organisational development is violated when outside forces start interfering in the affairs of an independent organisation.   But when you take a closer look at what is going on in the organisation, you will find ever so often a power struggle taking place.  A struggle between on one side the professionals, politicians, money and status seekers holding a firm grip of the affairs of the organisation, and on the other side the mobilised parents who think this should be their organisation and willing to fight for the interests of their children and themselves.
	In this power struggle we in NFPU have to say to the leaders of the organisation: 'sorry, but we are on the side of the parents'.  We cannot sit back and watch powerful figures using their position to keep the parents in the back seat forever. 
	We have to make sure that the funds which the organisation receives is used to promote mobilisation and empowerment of parents and not for the opposite purpose. In doing so, we are clearly infringing on the right of the organisation to run its own affairs but in our view, a worse alternative in the long run, is not to take sides in an unequal power struggle. 

National Parents' Associations
Another difficult area is to move the organisation from a centralised structure, towards one that is more decentralised. Organisations start in the capital city, they declare themselves to be a national association, but even after many years, you will find that nearly all the powers and activities are still located in and around the capital city.
	It is important for an advocacy organisation to have a strong central body.  After all the major task for an advocacy organisation is to lobby the central government on all the different issues of the rights for people with mental handicap. This is an issue which requires strength.
	But the real strength of an organisation lies in its membership.  Nor is it just in the numbers - although it can matter a lot if you have 50 or 5000 members behind you - but also in how the members participate actively in the organisation.  Strong local branches, covering at least the more populated areas of a country, is a must for an organisation which calls itself 'national'.
	Of course there are many good reasons why an organisation remains centralised; long distances, poor communication and lack of transport.  But behind the words, there are often signs of a power struggle.  Those who are in control of the organisation -  whether they are parents or professionals -  are very reluctant to help develop strong branches, which in turn can threaten their own powerbase.  The important task is to help to establish the conditions which can give the parents outside the capital city, a chance to develop local branches and play an active role in the organisation.

Advocacy or Delivery of Services?
What should be the concerns of a parents' association ?  Should it be delivering services, operating CBR-programmes, running day care centres, classes and workshops, or should it concentrate purely on advocacy work?  A proper discussion of  this issue would fill this book so I will just bring in one example from our experience.
	The main argument put forward as to why a parents' organisation should deliver services, is that the members are asking for services for their children.  What is the point of joining the organisation, if the organisation is not helping you with what you need more than anything else?   It is an argument with great relevance but with a serious dilemma.  If the organisation uses most of its resources on meeting the immediate needs of the parents and their children, who will then carry on the fight for the long term objective, namely the creation of a society for all; a society where a disabled person has equal opportunities?
	NFPU have over the years provided considerable support to our partner organisations to enable them to run different services, particularly for children with mental handicap.  But a critical look at the effects of this support, shows a more or less static situation.  The progress and the development of new services elsewhere is missing.  We are happy for the children who have got some basic services and for whom life is better.  But we are very unhappy for the overwhelming majority of children in need, whose lives never were affected by the activities of our partner organisation.
	Services to disabled children and adults should be provided through the same structure that delivers services to the non-disabled population.   When the government has taken on the responsibility to provide primary education for the children of the nation, the job for the parents association is to fight with all available means to make sure that children with mental handicap are not excluded from the school system.  If you give up and say: 'since the government is not giving our children education, we have to set up our own classes'; then you are giving the government an excellent opportunity to continue to neglect the rights of children with a mental handicap.

Parent Mobilisation and CBR Programmes
Are you attached to a Community Based Rehabilitation (CBR) programme where persons with mental handicap are directly or indirectly excluded?  There are many CBR programmes of that nature; I have worked in one myself.  Children with mental handicap were defined as a disability group which was 'too difficult for us to handle'.   We totally overlooked the importance of early stimulation and we never recognised the potential of the parents.
	A CBR programme is actually an ideal starting point for developing a parents' association.  You will have a network through which you can identify the parents and you have a system of delivering services to the disabled children, which should strongly involve the parents and other family members.  In order to allow the users to have a real influence on how the CBR programme develops, there must be some kind of organised group of the adult disabled, as well as for groups of parents with disabled children.
	Depending on the scope of the programme and the density of the population in the area, it could either be an association for parents with children in all disability groups, or an association for parents with mental handicap.  In many cases it will be best to start by including all disability groups, as many parents are likely not to differentiate sharply between mental handicap and other disabilities.  As they gain more knowledge about the child's impairment, they will find that they have more in common with parents who have a child with a similar disability.  If the number of parents is large enough, they could choose to split in groups, and eventually attach themselves to the relevant national disability organisation - if there is one.

Basic Principles
Of the different tools we in NFPU have for running our organisation, there is one that we have come to see as particularly important - our 11 point list of basic principles (see table).  These  principles have provided individual members, committees and staff with a common understanding of what we are struggling for. They have given us a clear  direction for our work, and have  served as important reference points whenever we have faced new developments.  
	An advocacy organisation is a political organisation, but sometimes we need to have a near religious approach to our task.  Many times, the fulfilment of our main objective - a society where people with mental handicap have equal opportunities - can seem just as impossible to reach as a society where the ten commandments in the Bible are fulfilled.  A list of basic principles is the commandments for an advocacy organisation.  Important as it is to list one's principles, it is even more important to live by them!

	BASIC PRINCIPLES
	Norwegian Association for Mentally Handicapped

 1.	Persons with mental handicap have an equal right to life.
 2. 	Persons with mental handicap have the right to grow up within their own families, or in a comparable environment with stable adult contact.
 3. 	Persons with mental handicap have the right to education at preschool age, to properly adapted and equal education in ordinary schools at all levels of the educational system, and the right to adult education.
 4. 	Persons with mental handicap have a right to a home of their own in accordance with normal standards and the minimum lifelong suitability.
 5. 	Persons with mental handicap have the right to employment and/or meaningful activity.
 6. 	Persons with mental handicap have the right to participate in cultural, leisure and holiday activities according to their own individual interests.
 7. 	Persons with mental handicap have the right to a normal way of life, and to adequate and properly adapted assistance.
 8. 	Persons with mental handicap have the right to the company of others, and to a family and sexual life.
 9. 	Persons with mental handicap have the right to participate in making decisions which affect their own life situation.
10. 	Families with persons with mental handicap living at home have the right to practical and financial support in order to provide necessary care.
11. 	Persons with mental handicap have the right to an organisation which can protect their interests.

New Organisational Models?
We in NFPU believe strongly in the partnership work we are doing.  We believe in parent empowerment and in the development of advocacy organisations.   But we do not want to hide the fact that difficulties are sometimes near overwhelming.  And we should never stop asking the basic question: 'how do we find the right kind of tools for this work'?  'Are there other ways of doing it which can work better?' 'Is there another way to link together parents within a country, so that jointly they can make an impact on their children's future?'  'Should we just forget all the Western or Northern organisational models and search for completely new models which are more appropriate to the culture and traditions in the different countries?'
	Which ever way we work, the real solutions to the problems, the right answers to all the difficult questions, will  only be found right there where the person with mental handicap lives with his or her family.  And families are where the challenge lies, for all of us. 

Pål Skogmo spent 12 years working as journalist and editor of various Norwegian newspapers.   He joined the Norwegian Volunteer Service in 1984 and started working in Mombasa, Kenya as administrator of the Bombolulu Coast Workshop for the Handicapped, a sheltered workshop and a farmers' training centre for 80 physically handicapped persons.  In 1987 he took up a position as coordinator for a Community Based Rehabilitation Programme (CBR) in Kilifi, Kenya, where he worked until 1990. From 1990 to 1991 he was the Secretary General of the Norwegian Anti-Apartheid Movement before moving to his present post with the Norwegian Association for Mentally Handicapped (NFPU) as a Programme officer in the section for Development Cooperation.

Contact Address:
	Norwegian Association for Mentally Handicapped - NFPU,
	Rosenkrantz Gate 16, 
	0160 Oslo, 
	Norway