Parents Promote Change in Tanzania

Parents Promote Change in Tanzania

Beda Mutagahywa

The Tanzania Association for Mentally Handicapped (TAMH) is a disabled people’s organisation consisting mainly, but not only, of people with developmental disabilities, their parents and family members. It is dedicated to advocating for the rights of people with developmental disabilities in Tanzania. It was established in 1981, and was then called the Tanzania Society for Cerebral Palsy and Mental Retardation (TSCP & MR). From the early days TAMH enjoyed the collaboration of a sister organisation, NFU, a family-based advocacy organisation in Norway. In this article Beda briefly outlines the challenges TAMH has faced in becoming a strong association – advocating for the rights of a vulnerable group and promoting the inclusion of children with developmental disabilities in education.

TAMH was formed by groups of parents and professionals in the health and social welfare sectors. The association focused on the provision of education services. It built, or mobilised funds for the building of, units for disabled children and argued successfully for these units to be attached to, and be part of, regular primary schools. The early collaboration with NFU helped TAMH to focus on creating awareness of rights and the facilitation of education services.

The association raised funds to pay for support persons who assisted teachers within those units, and to provide for teaching and learning materials, and second-hand clothes and shoes. The focus was on the provision of charitable and educational services, since no other body had taken on this responsibility. These activities were very time-consuming.

In these early days the leadership was in the hands of the professional members (mainly teachers). Parents and family members played no major role in leadership. In urban centres, where the association was strongest, a number of units were established, and slowly education for disabled children was taken up by Government. However many units were built, they were still too few. It soon became clear that the parents’ capacity to build units on their own was limited. The association’s administration costs were very high and the quality of the education provided in the units was not satisfactory. Soon parents started questioning the leadership and there was a clear need for change. However the leadership was unable to take up the challenge and the association went through a period of crisis from 1994 to 1996.

The leadership crisis strengthened the resolve of the parent members and they formed a task force to resolve the crisis. They went beyond the leadership and administration aspects of the crisis, such as financial accountability, transparency and democracy. They also examined the aims and objectives, working strategies and general orientation of the association. During this crisis, formal collaboration with NFU broke down. However informal collaboration continued between NFU and the parents’ task force.

A new constitution

The task force recommendations were put to the General Assembly of 1996, which led to major changes in the constitution and to a change of name from ‘TSCP & MR’ to TAMH. The focus moved from service to advocacy; and from charity to human rights. The role of people with disabilities, parents, and family moved to centre stage, instead of the professional members. There was also a clear separation between the leadership and the secretariat. Inclusion became the main strategy.

A special effort was made to separate local branch activities from the units and school activities, and to establish new branches in both urban and rural areas. The role played by our partners NFU during the crisis and in the amendment of the constitution was critical. It could be said in fact that NFU’s investment in parents’ mobilisation and empowerment at local branch level saved the Association and enabled it to emerge from the crisis – strengthened rather then weakened.

Professor Beda Mutagahywa is the Chairman of TAMH and is the father of a young man who has developmental disabilities. He can be contacted at:
TAMH
PO Box 35062
Dar es Salaam
Tanzania
Email: tamh@ud.co.tz