Self Care Groups - Comments from ASODISPIE, Piedecuesta, Colombia

Marlene Wiens translated the comments from Rocio and Ofelia of ASODISPIE (Piedecuesta, Colombia) about setting up of self-care groups:

1. Our coming together as persons with disabilities, persons with chronic conditions and/or their family members is a key first step in the process for the paradigm shift that becomes an active subject in ensuring participation, continuity and sustainability.

Comments: Meeting together helps to build participation and meetings should continue in the future. The interaction helps participants to realize the importance of the issues they are discussing. Empathy and trust develops and this leads to expression of experiences and reflection on their lives.When I asked Rocio and Ofelia the difference between “integración” and “participación” they said that “integración” is more like attendance and this is also a goal of Asodispie – to increase the attendance of their membership at meetings. But participation is something that is developed in stages.

2. Many of us do not require any specific continuing or periodic medical care. For us disability or the chronic condition may be part of our lives.

Comment: Yes, it is true, but it is important to learn about our condition in order to prevent secondary problems and to have a better quality of life.

3. Forming a group is not automatic and needs care and facilitation in the beginning. An external facilitator can be useful in the beginning. However with greater experience and capacity building, we as persons with disabilities and/or persons with chronic conditions can also play this role.

Comments: An external facilitator is important at the beginning to orientate and to review the work being done so that a productive work can be achieved. But since the facilitators will not always be there, it is important that the PWD become facilitators so the work can go on. The ideal is that the group will take their own actions. But they will still need someone to coordinate and to orientate them and these people can be from within the group. But there needs to be funds to encourage people to dedicate the time to do the coordination. In this year, the current facilitators (Rocio and Ofelia) should delegate responsibilities so that the leaders can have direction and also to Asodispie so they learn how to find resources.

4. Forming a group, sharing experiences and ideas can be a powerful tool to break our isolation, to identify and access opportunities and strategies. Groups have to be based on participation, reciprocal confidence and relationships, and this requires time. Forming groups can pass through ups and downs, so it is important not to give up but to resist and find ways of overcoming initial difficulties.

Comments: The groups provide the possibilities to achieve more things like activities and resources. Our groups had their own characteristics in terms of the way they matured – the time they took to establish relationships with each other prepared them to confront issues. The participants share common interests, which is a powerful tool and can lead to achievement of future benefits. All groups have their problems but all are active, they all have their moments of inactivity and passivity but that is normal.

5. As persons with disabilities, with chronic conditions and as family members, we may face different obstacles to find a place for our meetings, barriers to travel and access meeting places, barriers to effectively participate and share in the groups. All these need to be acknowledged so that satisfactory solutions can be sought that respect our dignities as human beings.

Comment: Each group has their own difficulties, depending on the disability. It is one of the most obvious issues that we observe and that we always take into account to have effective meetings.

6. As a group we can liaise and advocate for respect of our human rights.

Comments: First we need to come together, to act as a group in Asodispie, to understand and know our own organization and our rights. And after that, we can work with people outside of Asodispie, which will give us more force.