CAPACITY BUILDING AND HUMAN RIGHTS ADVOCACY
The capacity building and human rights advocacy campaign was an initiative of youth with cerebral Palsy, who are among the most marginalised communities and who face prejudices and discrimination in their pursuit of better standards of living. In Uganda alone, PWD's account for over 7.2 % of the population, the majority of these being young people (Uganda Demographic and Health Survey 2011). People with disabilities are excluded from political, social and economic activities as communities are at times not aware of the rights and so are many service providers and other civil society actors. Most affected among them are people living with Cerebral Palsy (CP) who have for long been marginalized and not actively involved in the activities of the disability movement. A lot of myth still exist about Cerebral Palsy, for instance majority of community members associate it with witchcraft. As such many people living with CP have had their rights violated.
Owing to this desolate situation, in 2011 together with colleagues, I initiated a project for young people with CP under the National Union of Disabled Persons of Uganda (NUDIPU). The aim of the project was to build the capacity of people living with CP to demand and defend their rights.
I. To raise public awareness about the rights of people with CP in Uganda.
II. To mobilise and enhance the capacity of people with CP to promote and protect their fundamental human rights.
III. To advocate for the inclusion of People with CP in national and local government programmes.
As a person living with CP, I believe that young people with CP have the capacity and potential to live independent and self-sustaining lives.
HOW THE OBJECTIVES WERE ACHIEVED
I mobilized two youth with Cerebral Palsy whom I worked with to mobilise more youth that resulted into the formation of the Uganda National Association of Cerebral Palsy (UNAC) in 2011 which was later registered as a Non-Governmental Organization in 2013. Over 840 people (497 are males and 343 are females) with Cerebral Palsy have been mobilized.
People with Cerebral palsy are discriminated by their family members, community members and service providers hence depriving them of their fundamental human rights to access basic social services and to participate in family and community activities. To address the challenge, UNAC orgaanised targeted trainings to enhance the capacity of people with Cerebral Palsy to know, demand and protect their fundamental human rights. The association also conducts radio talk shows, community dialogues and home visits to engage family members on how to take care of the children with CP including feeding, physiotherapy and medication among others.
UNAC has designed innovative approaches in mobilising and building the capacity of people with cerebral palsy. The campaign has opened a number of networking and partnership opportunities for young people with CP. The established partnerships have resulted into learning from each other and sharing best practices to advance our development work. In addition, UNAC has innovatively supported families to enhance the nutrition of children with Cerebral palsy through training and provision of Income Generating Activities. Parents and care givers are also given skills on physiotherapy and managing the challenges associated with CP.
Following the formation of UNAC there is no doubt that a number of young people with cerebral palsy (CP) have started to realize their potential. They are actively engaging in activities of different organizations and are not ashamed of their identity. In other words, their self-confidence has been built. There has been a significant reduction in the negative cultural practices and myths towards people with Cerebral Palsy andviolation of human rights reported. There is also increased acceptance of young people with CP in various communities. This has translated into access to education, health and economic opportunities for young people with CP.
The community awareness about CP has contributed to identification and registration of over 840 people with CP in three districts of Uganda.
Lastly, working as a role model and being recognized internationally as Queens Young leader award winner 2015 is another great impact to the campaign.
High expectations from the target group and reluctance of the parents and families of children with Cerebral palsy. Most people with Cerebral Palsy are among the poorest of the poor and have high expectations from projects that target them especially for tangible benefits which this campaign does not provide however the project has ensured that the target group understands the purpose and objectives of the project in order to reduce on their demands, expectations and gain their acceptance and effective participation in the implementation of the project
The campaign lacked effective monitoring mechanisms. The budget lacks a provision to facilitate monitoring. Without a provision for monitoring, it becomes hard to respond to changes in time by shortening feedback loops, it leads to delayed decision making, lessons learnt are not easy to document and communicate so as to improve and learn from past mistakes. Above all, it is not only the result or impact that counts but also the process.
Awareness raising alone cannot change the lives of youths with Cerebral Palsy. People with CP need medication, physiotherapy and good feeding among others which require resources. It is crucial that a component of income generation be integrated in the human rights awareness activities to enable them meet their needs.
CP is not homogenous and so are their needs. It is therefore important to make a provision that allows the different needs of youths with CP to be met such as assistive devices and medication among others. Community outreaches and home visits play an important role in mobilizing people with Cerebral palsy. Strengthening the component of follow up visits enhances monitoring and effective support to families of children with cerebral palsy. Most parents/caregivers do not know how to take care of their children with CP. To be more cost effective, parents and caregivers need to be given skills on physiotherapy so as to cut down on costs of transport to health centers.