Abstract
During my three years of work in Uzbekistan I have gathered a lot of information about family structure in Uzbekistan rural areas. I'm actively involved in an integration programme on a grassroots level that aims to provide schooling for physically disabled children (polio and cerebral palsy) in the rural areas. This projects involves a home based rehabilitation project, an inclusive education project for first grade students, translation and Information Project, setting up a workshop for the production of wheelchairs and other aids as well as integration summer camps on national level.
One of our main aims is to help the existing institutions to find their new role in a more integrated system of education and rehabilitation.
We want to see a development of local rehabilitation workers, who visit families in their villages and provide the necessary support for them.
In the task of awareness raising we have also seen progress through the great interest of the media and co-operation with the State Department of special education.
During the last decade there have been two main approach to education and rehabilitation of children with cerebral palsy and other physical disabilities.
1) the classical one of rehabilitation and education in a specially for the disabled created system.
2) the approach of integration with in the mainstream system
but lets have a short few on the specialised system first. All these schools, rehabilitation centres are designed for physical disabled people with all the access and support they need. Physiotherapy, orthopedic aids,... doctors and special teachers working in cooperation and under one roof. This is where I also worked in Germany and I was quit convinced that it was the best for my little patients and their families. Here and there I was challenged by parents to think about integration but the examples I saw didn't really impress me nor convince me.
Only after coming to Uzbekistan I faced the challenge of finding out that things might look different when you come to a new culture and a new country. How does education and rehabilitation of cerebral palsy children work best in a country, that has a special education system with qualified teachers and medical personal and all the positive things it brings with it, but most of it is very much centralized in Tashkent, the capital city. Meaning that families in the regions who live up to a 1000km away have as much as no access to it. What was the conclusion to this? Building more expensive and often still far away boarding schools, or enable the communities to look after their disabled members themself?
To come up with at least some answers and a programme I could present to my emploee, I had to ask my self some very basic questions, like..
What is integration or Inclusive education?
Lets start with what it is not. Integration is not, placing a disabled child in a mainstream school, padding our own shoulder and say "We have integrated this child". These were some of the projects I have seen before. Most of the time the child drops out after a few years or it develops secondary problems because of the lack of medical support. So what is integration?
I think, integration is not about where we are, but what we do and how much we are part of the bigger community around us.
Integration aims for participation and recognition of the disabled person/child with in the community he /she lives in.
To move a child from a special school to a mainstream school does not yet mean that it is participating and well received by the other children. Somebody once said, to be born in a garage does not make you become a car. To go to a mainstream school does not make the child able-body nor automatically integrated.
To succeed in integration we need to build a network that provides access to information, rehabilitation and education. What do I mean by this?
NETWORK
1. Information to create an environment where we can integrate disabled children first of all the families, schools, the whole community needs information about disabled children and their needs.
This we can facilitated by,
A community will only start to think about integration when it realizes the need for it!!
2) Home based Rehabilitation
children with cerebral palsy need an ongoing stimulation of their motor skills, their perception and their language development.
Again the easiest solution seams to be to create rehabilitation centres, special schools... but does it really work for a family out in the regions?
Let me tell you about Dilfusa a girl with polio in Khiva, one of the great Silkroad sights of Uzbekistan. Dilfusa is 6 years old and has a severe case of polio. She lives in a village about 10 km outside of Khiva. She is the middle one of 7 siblings between 11 and 1year old. Her family moved out from the father's parents' house into their own house 2 years ago, so there is no mother in law who could help looking after the kids. Will a family like this be able to come to a rehabilitation centre for therapy every week for a long time?
Dilfusa has also been to a centre in Tashkent where she stayed for periods of three months. She felt home sick a lot, didn't eat well and when she came home she was scared every time her father would put her in a car because she thought he will take her to Tashkent again.
Still her parents are very concerned about her physical state and training, so that even when we introduced the idea of an integrated education for Dilfusa the first question was but will she get her physiotherapy, will we be able to take her to the doctors in the capital at times?
I belief that all kind of therapy should ideally happen at the school even if it is a mainstream school or in the child's home. And it needs to involve a lot of things that were said under information, counseling parents, grandparents and teachers explaining causes and what therapy we will use...
I have a hope that in the future we will have mobile physios, occupational therapists and speech therapists, and resource teachers who visit mainstream schools and local homes. People who are close to the child and its family who can help to find resources like wheelchairs or walkers, who can advice and come alongside the teacher, people that prevent that children drop out of school because of secondary problems like stiff joints or pressure source.
3.) Education
If we have prepared the community as well as the disabled child it self, the step to integration or inclusive education is not a big one any more. The problem is much more that, as education is often the first place where we think about integration it is where we start it- and then we have to keep up with our own speed in the other areas.
We are facing this challenge in Khiva right now. Where we did a lot of preparation with in the families of the disabled children and on the rehabilitation side but too little information in the school and the community. The alternative would have been another one or two years with out education for the 10 children who are attending our class now. Over the first year we already have seen a great progress in the communities acceptance of the disabled children, as in the first few weeks of the school term last September the special class was a sensation that attracted children and teachers in the same way. This made us and our children often feel uncomfortable, but by the end of this term we are just as part of the school as all the other classes and at break times able-body children and disabled children mix freely.
Still we have to overcome precousions and fears of parents that are holding back about their children mixing with disabled children often motivated by folk beliefs that some way or the other these things can spread. And again we are back to step one: The information and awareness rising, as these beliefs will only change if dealt with on grass root level. Best in talks at a one to one situation over a cup of tea after a physio or preschool session in the home of the local family.
I personally think that with the years there will be a three-step integration programme, and in some countries like Sweden I believe it is already happening like that. 1. Inclusive education, disabled children in normal classes 2.integration classes, special classes in mainstream schools 3.special schools, for more sever multiple disabled children
And hopefully the system will be an open one that allows the child to move towards inclusive education.
As we go on in the integration process the role of special schools and special teachers will change into resource centres and mobile resource teachers* who go alongside the mainstream school and provide help when it is needed. And it is going to be a big job to help these institutions to change their roles and work against the fear that inclusive education is all about erasing the special education system and making them all unemployed.
Another main aspect is probably the curriculum we use. We need to come to the point where the curriculum is adaptable to the child a not every pupil that does not match the standards is a potential drop out. We want to learn to see the child's potential and abilities much more then its disabilities. And then develop a curriculum that helps every child to learn and develop with in its own abilities.
This brings us to the area of teachers and students training the whole team of teaching methods as group work, per teaching ... I'm not a specialist in this as all and so I will not go into details but it is an important area to think about.
All in all I can say it is very exciting to be involved in this development in Uzbekistan and I'm convinced that if we set up this kind of network and cooperation between the different people who are working with disabled children in our country, integration is not just the best for the child with cerebral palsy or polio but also for the community we all live in. And I like to see us, and I'm talking as representative of a NGO take our part in helping the communities and governments around the world develop these networks that make integration happen be it on a grass root level in modeling the practical work or in training or in helping the people involved in policy making coming to meetings like this, we need to be involved but never forget that our involvement is a temporary one. We must not be afraid of handing over projects and programs, but aim for the empowerment of the people we work with.
I like to see the community as a body with different parts like arms and legs, eyes and nose that all work together but have different function. If we have pain in one part of our body we do normally not neglect it or even cut it off and send it to hospital by it self. Much more our whole being will be cantered around the problem and we will take care of it with our mind, body and soul.
Lets start to take care of the disabled parts of our community in the same way.
Thank you.
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