1
	Towards the New Millennium

	Roy McConkey and Brian O'Toole

Disability occurs in every society throughout the world and has done so down through the centuries.   Common responses have been shame, prejudice and exclusion from community life.  Amazingly though, as we move towards the year 2000, the world community is agreed on what our social policy should now be with regard to people with a disability.  This has been enshrined in various declarations of rights, the most recent being this 1989 article on the rights of children: 

	A mentally or physically disabled child should enjoy a full and decent life in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community.
	Article 23: United Nation's Convention of the Rights of the Child.

And not only is there an agreement on what the aims of our social policy  should be but there is agreement as to how it is going to be attained, namely  by supporting families and local communities to cope with disabilities.  
	As we have discovered in industrialised countries, the millions of pounds which have been spent on services and the veritable army of professionals that have been recruited, have not resulted in fulfilling those rights.  Our institutions, our special schools, our sheltered workshops have not created a full and decent life for people with disabilities.  And so we look to the bold new approach of community care to fulfil that aspiration.   
	Likewise in developing countries, where 90% of the world's citizens with disabilities live, there is a realization that community based rehabilitation (CBR), as it has come to be known, is the only feasible way of providing any sort of help to people with a disability.  Once again, the hope is that by training families and community personnel, a modicum of help can be given to all those in need.   The finance will never be found to support a professional workforce.

New Perspectives on Handicaps
This shift towards community based care is more than just a pragmatic response.  Rather it is based on a very important new perspective that we have on handicaps.  This involves making a distinction between a disability and a handicap.  A disability may be a biological given of a person but handicaps are socially defined.  Hence today we can state two truisms.  
	First, we can say that "a disability need not be a handicap".  We can point to young people with Down Syndrome who have attended ordinary schools, who are in employment and who have many friends around their town or village.  They have a disability but it has not become a handicap to them.
	The second truism is that "handicaps are in the eye of the beholder".  To often we see a person in a wheelchair and think of her inability to travel on public transport rather than considering that she might be a talented musician, artist or school teacher!
	Both these truisms represent a remarkable shift in accepted wisdom about disability and most people have great difficulty accommodating to these new ways of thinking.  This includes disability professionals as well as families, communities and even people with disabilities themselves!  We have all grown up believing that handicaps were absolute characteristics of 'unfortunate' people.
	This new thinking creates a whole new role for services to people with disabilities and for the people engaged in them.  Our functions are two-fold; to develop people's talents - and not just their cognitive ability but also their physical, social, artistic and emotional talents.  And secondly that our role is to create opportunities for people with disabilities, to open doors for them.  

Innovations in Developing Countries
This volume explores how these twin aims can become a reality in developing countries.  The authors have been drawn from Africa, Asia and America so as to give a global perspective and all have been actively involved in developing and sustaining services for children and adults with a range of disabilities - physical, sensorial and intellectual.  
	For most people this has been an uphill struggle as they have battled against scarce resources, antagonistic attitudes and governmental indifference.  Hard decisions have had to be made when faced with dilemmas such as:
 Is it better to give a little help to many people with disabilities, or to 	give a quality service to a few?
 Is it better to provide direct services or do you try to mobilise the 
	families and community to help themselves?
 Do you set up a special service solely for people with disabilities or do you try to work through existing services which are available in the community?
 Do you focus on only one type of disability or do you try and help 
	people with various disabilities within a defined community?
 Do you base the service within an identifiable, often purpose-built 
	centre or do you base it in existing community facilities and family homes?
 Do you restrict your help to certain areas or should you try to provide 	a regional or national service?

Response to Disability
These are dilemmas because each course of action has its particular advantages and disadvantages.  Arguments abound in the literature and in conference halls but as yet we have little objective evidence to prove that any one approach produces better outcomes than another.  Hence, decisions on these key issues have to be based on the opinions and beliefs of the service planners and policy makers.
	In many developing countries this has proved disastrous!  Outmoded Western models of rehabilitation services have been foisted on developing countries by international 'experts' and donor agencies.  Finance is donated to build and equip rehabilitation centres which national budgets cannot afford to staff adequately or to maintain.   Moreover such centres are invariably urban based and serve only a small minority of those needing help.  If charges are levied, then only the more affluent people benefit.
	Likewise, staffing models have replicated those found in the affluent west.  Local people are given bursaries to train in Europe, North America or Japan in service settings far removed from the working conditions of home.  They return ill-equipped to cope with local needs and not surprisingly many are enticed to emigrate to other countries where salaries and working conditions are better.  Those who remain are frequently over-worked or trapped within hierarchical systems which give little credit to personal initiatives and innovation.
	Consequently tens of millions of disabled people in the developing world receive no assistance; unaware of the international statements of rights issued on their behalf.

Starting Points
Amidst this depressing reality, our authors do identify some rays of hope.  A number of themes re-echo throughout their chapters.

Firstly, ordinary people can reduce the handicapping effects of a disability if given appropriate knowledge and skills:  Family members, neighbours and schoolteachers - to name but three groups - are available in nearly every community throughout the world.  The challenge is to find ways of engaging them in helping and to give them the information they need to do the job.  This task is just as pertinent in developed countries that wish  to establish community-based services, for instance promoting paid employment for young people with intellectual disabilities.

	Insert Photo 1.1 here 

Secondly, services should be built around the needs of the people with disabilities and the needs of their families:  A 'bottom-up' rather than a 'top-down' approach is more likely to do the job it is set up to do.  Moreover, such services are more sustainable within local resources.  It goes without saying that people with disabilities and their families, along with community activists, should be active participants in the development and management of the services.  These can start at a local level before expanding regionally or nationally.  Once again, the theme of user participation is coming to the fore in Western services.

Thirdly, the negative attitudes and prejudices of able-bodied people can be overcome:  Every human culture has found its own explanations for why some of its members are born with disabilities.  Invariably, these involve some form of supernatural punishments which invoke a sense of guilt and shame.  Consequently, people with disabilities and their families are spurned and excluded from community life.  But attitudes can be changed, especially through the advocacy of local people and by bringing people into contact with their disabled peers.  Accurate information about the causes of disability also assists.  
	In western countries too, this issue is topical.  For example the British government is committed to spending over £2 million on a national disability awareness campaign during 1995.

Fourthly, services for people with disabilities should be integrated into community development schemes:  'Enabling communities to help themselves' has become the slogan for sustainable development with the goal of ensuring that everyone in the community benefits in some way and not just one particular group.  This calls for a radical shift in emphasis in CBR away from word 'rehabilitation' to the word 'community'.  Major issues then ensue; should CBR programmes be located within health service structures and should they be staffed by rehabilitation specialists with little training and experience of community development work?  Community-based projects the world-over still struggle with trying to balance the 'special needs' which arise from a disability and the 'common needs' which are unmet in the wider community.

Fifthly, people with disabilities and/or their families must become economically independent:  Disability and poverty are almost synonymous the world-over although the welfare benefit systems of the rich countries protect their disabled citizens from hunger and homelessness.  In poorer countries it is even more crucial that people with disabilities and their families do not become dependent on 'charity' from developed countries.  Rather the goal must be to move people 'through services' so that others can get a share of the available help.  Thus far, this has proved an elusive goal although the logic behind the aim cannot be questioned.

Throughout this book you will read of many imaginative ways in which these five aspirations have become a reality.  By sharing information across cultures and continents we hope to bolster the morale of those already struggling to maintain services while encouraging others to develop new initiatives.  Perhaps too we might cause some people to think again about the way they work at present.  All of us need to look to the distant horizon to ensure that we are travelling on the right path.

Present Constraints
Various authors pinpoint particular difficulties they have encountered in their work.  We summarise them here simply to offer a reassurance that it is no shame to admit one's problems and to encourage greater efforts at finding workable solutions.  Nor are these difficulties unique to the developing world.

 Personal Conflicts:  No project is immune from arguments be they among or between members of management committees, paid staff, volunteers and consumers.  Projects can become identified as belonging to one person or professional workers disparage the contributions of their colleagues; the list is apparently endless.
 Misuse of Funds: Certain people in the organisation may be tempted to help themselves to the goods or money which donors had intended to be used to help others.
 Bad Practices: A charitable ethos can end up condoning bad practice in services on the grounds that something is better than nothing.  Hence people are left in urine-soaked beds; children are tied into chairs to prevent them wandering and corporal punishments are often used.  
 Motivation and Enthusiasm runs out: Projects often begin in a wave of enthusiasm but as time goes on, fewer people have to take on more of the work.  This then becomes a self-defeating spiral as workers become exhausted.  Ultimately, projects collapse through lack of interest although the need for them remains.  In these circumstances it can be harder to restart, as people are discouraged by the previous attempts.
 Aims become distorted: Another common phenomena is that the project's aims can become distorted over time.  The workshop designed to train people for jobs in the community becomes a sheltered workshop from which no one leaves.   The parent-run, community centre is taken over by a professional worker and becomes a special unit solely for disabled children.  
 Funds run out: This is a recurring problem as so many disability projects still depend on overseas funding.  More time may be spent applying for monies than in doing the work!  There is also the danger that projects are designed to meet the requirements of funders rather than the needs of local people!  An allied problem is an over-dependence on expatriate staff; when they leave, the project may collapse.

This book has no instant solutions for these common problems, except one.  All projects need to constantly evaluate their work so that they can pinpoint the specific problems, take corrective action and crucially check that these have had the desired effect.  Moreover this evaluation should ensure that the service remains true to its aims and philosophy.  Sad to say, few service providers in either the developed or developing world have heeded this advice; claiming to be too busy doing the job and having no time for evaluation.  Which is akin to driving a car without ever checking where you are going or the state it is in.  The outcomes are however similar - crashes and breakdowns!

Strategies for Initiating Services
Based on their varied experiences,  the authors recommend particular approaches which they have found beneficial.  Although these often vary in the detail, they share some common characteristics which we have summarised as follows:
 Consult consumers and communities:  Take time to listen to families and people with a disability, get to know them and their lifestyle; share in their daily lives.  Likewise, meet people from the community. In this way you will begin to see the world through their eyes.
 Build relationships: Communities, by definition,  are based around relationships of one form or another.  Hence the central task is to ensure that people with disabilities and their families are knitted into the relationships which already exist or through the building of new ones.  This often begins with just one person.
 Develop your skills as a trainer: It has been said that effective CBR is based on three things; training, training and training!  The passing on of knowledge and skills to families, CBR workers and community helpers is the essence of the work.  Yet too often this is done in ineffective ways and without checking on what the learners need or want to know!  
 Nurture the family's capacity to cope: This has been most frequently done through regular visits to the family home by a worker.  Meetings with other families are another useful source of building family confidence and giving support to one another.
 Nurturing the community's capacity to cope: Building links with significant people in the community is another key task.  Primary Health Care workers can advise families at home; teachers in nursery and primary schools can become more receptive to having children and young people with disabilities in their class; local businesses may offer work experience placements to young adults; and minibus drivers may have more patience with wheel-chair users.
 Community Ownership: The management of the project should remain with the local community, usually in some form of elected committee made up of service users, people with disabilities and interested people from the community.  It is an unresolved problem as to how best to nurture the functioning of these committees so that services survive beyond the set-up phase.

Role of Government
Given this emphasis on community, we might then reasonably ask what the role of government should be?  We must accept for the time-being, that disability will NOT be a priority for government expenditure.  It is therefore unrealistic to expect them to directly fund services.  The energies of lobbyists are better directed at encouraging governments to set the context in which appropriate services can grow and develop.  This would mean:

	Enacting legislation to safeguard the rights of people with disabilities.  Two areas have been the focus of international lobbying; the right to education and the right to equal job opportunities.
	Defining the government's aspirations as to the sorts of services they would like to see made available in the country for people with disabilities.  Such statements have usually emerged from a process of systematic consultation with all interested parties and are updated through the formation of government sponsored bodies, such as a National Council for Disability.
	Assigning ministerial responsibility for disability issues, either within a single ministry, or by setting up an inter-ministerial group.  This should make sure that a co-ordinated approach develops across interested ministries while at the same time ensuring that disability issues are brought to the attention of all ministers.  Parallel structures need to be developed for local government.
	Developing national standards for services and evolving mechanisms to ensure that these standards are maintained.  This would apply in the first instance to services provided by government, such as education, health and social welfare services.  
	The training of significant professionals should embrace disability issues, namely teachers, nurses and doctors.

Sad to say, the majority of governments have yet to embark on such programmes  but much can be learnt from the experiences of those which have done so.

International Aid
Almost without exception, the  innovative schemes described in this book are supported in one form or another by monies donated by international aid agencies.  In what sense then can such schemes ever be owned by the community when they are reliant on external funding and subject to the priorities set by the funders?
	This issue is so novel that no clear paths have yet emerged to resolve the paradox.  Past notions of disability as being akin to 'relief work' or 'chronic sickness' are outmoded and yet present funding arrangements are often still based on these models.
	Among the proposals under consideration for new ways of working are the following:
	All development projects need to be aware of disability issues, be it in education, agriculture or housing.  Too many aid agencies still compartmentalise their programmes to the detriment of people with disabilities.
	People with disabilities are included among the regional representatives of donor agencies.  They should personally visit projects applying for funds.
	Aid is given primarily in the form of seconded personnel who are linked with local partners to ensure transfer of skills and continuity of provision.
	International agencies enter into agreements with governments, either centrally or locally, to develop joint projects which have been developed through consultation with local communities.
	Funding is phased so that it gradually tapers off.  For example projects may receive 90% funding for the first two years which reduces over the next three years to 75%, then 50% and 25%.
	Funding is given on a matched basis.  Monies raised in-country are matched by the donor agency.  Expertise is made available to communities on income generation strategies.

Names and Labels
Finally, a word about words as they invariably betray our perceptions and prejudices.  A lively debate presently rages over the appropriate labels to describe people who have a disability.  Disabled activists promote the use of the term, 'disabled people' to emphasise that society has disabled them from living a full life.  Others prefer the term 'people with disabilities' which they feel emphasises that they are people first and their disability is secondary.  Throughout the book you will find both terms used as chosen by the authors.
	Similarly, the world's nations have been grouped into  'developed' countries and those who are said to be 'developing'.  The latter term is especially ironic when so many poor countries are in fact becoming poorer!  However alternative labels are equally unsuitable.  Once again, the choice of labels has been determined by the authors of each chapter.
	Of course these debates only arise because of our need to divide the world into 'them' and 'us'.  Is it too much to expect that such divisions will become less significant in the new millennium?

Acknowledgement

	Photograph by Liz Lee and taken at Lilongwe Cheshire Project, 
	Malawi

Roy McConkey is Director of Training and Research with the Brothers of Charity Services in Scotland.  A psychologist by training, he has worked in England and Ireland before moving to his present post.  He has completed many overseas assignments sponsored by UNESCO, the Leonard Cheshire Foundation International, Canadian International Development Agency and Irish Foreign Aid.

Brian O'Toole is a British educationalist psychologist who has worked in Guyana for 17 years.  Initially he spent six years introducing and developing the Special Education programme at the University of Guyana.  For the past nine years he has directed the Guyana Community Based Rehabilitation Programme.  He has worked as a consultant in rehabilitation for PAHO-WHO, UNESCO, UNICEF and Save the Children UK and Norway.

Further Reading
The ideas summarised in this chapter and which re-occur throughout the book, are expanded on more fully in the following publications. 
Coleridge, P. (1993).  Disability, Liberation and Development. Oxford:	Oxfam.
Fulcher, G. (1989).  Disabling Policies?  A Comparative Approach to 	Education Policy and Disability.  London: Falmer.
Gartner, A., Lipsky, D.K., & Turnbull, A. (1991).  Supporting Families with a Child with a Disability: An International Outlook. Baltimore: Paul Brookes Publishing.
Helander, E. (1993).  Prejudice and Dignity: An Introduction to 	Community Based Rehabilitation. Geneva: UNDP.
Helander, E., Mendis, P., Nelson, G., &  Goerdt, A. (1989).  Training 	Disabled Persons in the Community. Geneva: World Health Organisation.
ILSMH. (1990).  Education for All.  Brussels: ILSMH.
McConkey, R. (1986).  Working with Parents: A Practical Guide for Teachers and Therapists. Beckenham, Kent: Croom Helm.
McConkey, R. (1993). Training for All: Developing Video-based Training Packages for Parent and Community Education.  Paris: UNESCO.
McConkey, R. (1994).  Innovations in Educating Communities about 	Disability.  Chorley, Lancs: Lisieux Hall Publications.
Mittler, P. & Brouillette, R. (eds.) (1993).  World  Yearbook of Education, 1993: Special Needs Education.  London: Kogan Page.

Mittler, P., Mittler, H., & McConachie, H. (1986). Working Together:Guidelines for Partnership between Professionals and Parents of Children and Young People with Disabilities. Paris: UNESCO.
O'Toole, B. (1991). Guide to Community-Based Rehabilitation Services. Paris: UNESCO.
Save the Children Fund. (1994). Children, Disability and Development: 	Achievement and Challenge.  London: SCF.
Schwartz, D.B. (1992). Crossing the River: Creating a Conceptual Revolution in Community and Disability.  Cambridge, Mass.: Brookline Books.
Thorburn, M.J. & Marfo, K. (1990). Practical Approaches to Childhood Disability in Developing Countries: Insights from Experience and Research.  St. John's: Memorial University of Newfoundland.
Werner, D. (1987). Disabled Village Children. Palo Alto, CA.:	Hesperian Foundation.   
Werner, D. & Bower, B. (1982). Helping Health Workers Learn. 	Palo Alto, CA.: Hesperian Foundation.
World Health Organisation. (1985). Mental Retardation: Meeting the Challenge. Geneva: W.H.O.
UNESCO. (1988). Consultation on Special Education. Paris: UNESCO.
UNICEF. (1990). First Call for Children. New York: UNICEF.
Zinkin, P. & McConachie, H. (eds.) (1995).  Disabled Children and Developing Countries.  London: Mackeith Press.