DSi last visited Bangladesh in November 2019 when we supported Down Syndrome Society of Bangladesh to establish a self-advocacy group. Since then the group, comprising 13 people with Down syndrome has met 12 times, as well as 7 sessions focused on advocacy activities.

Our self-advocacy training has also led to Thengamara Mohila Sabuj Sangha (TMSS) starting a self-advocacy group of 6 people with Down syndrome.

During the meetings they covered a diverse range of subjects including:

  • Choices and decision making;
  • Rights and responsibilities;
  • Making a plan for life;
  • Respecting other people;
  • Expressing feelings;
  • Expressing opinions;
  • Building a support network.

Measuring the success of the project

Down Syndrome Society of Bangladesh carried out semi-structured interviews with the self-advocates after finishing the group meetings. 

Overall there was a huge increase in understanding of advocacy and human rights for the self-advocates, although starting levels of knowledge were very low.

All of the self-advocates completing the survey were able to give a definition of what a self-advocate does and why speaking up is important to them. The answers included:

  • “To claim my rights”
  • “To include me in the society”
  • "I can tell about myself and I can ask what I need"
  • “To speak my rights in the society”
  • "To achieve my goal"

All of the self-advocates completing the survey were able to name at least 1 human right and explain how it applied to their life:

  • Right to work – “to get job and earn money for my family”
  • Right to life - "I would like to have opportunity to go to hospital if I am sick"
  • Right to education - "To include me in the community"

The self-advocacy group engaged in lots of different forms of advocacy. Many of the self-advocates had little or no experience of speaking up about anything and so the initial focus was on personal or very localised issues including:

  • Talking to parents and families about their rights;
  • Presenting about their rights at a Down Syndrome Awareness Month event at Dhaka University;
  • Presenting on self-advocacy and rights to the Dhaka University Department of Communication Disorders;
  • Speaking about their rights and advocating to the Chairman of the Neuro-Developmental Disability Trust for the creation of a self-advocate committee;
  • Meeting with bank officials to advocate for jobs and ask about opening bank accounts;
  • Presenting on Down syndrome and their right to healthcare at a hospital;
  • Meeting with representatives from a local community support organisation to talk about their rights;
  • Presenting at SightSavers Inclusion Works launch workshop;
  • Engaging in Inclusion International’s Inclusion Works programme on employment of persons with intellectual disabilities.

What's next?

We are in the early stages of a new 3-year project with funding from NORAD and IDA which will directly involve the self-advocacy group from Bangladesh. Within this project we will deliver human rights training to Down Syndrome Society of Bangladesh and we will support the self-advocates to participate in employment advocacy. 

We have thoroughly enjoyed working with Down Syndrome Society of Bangladesh and their self-advocacy group since the project began in July 2019. The achievements of this group in such a short time have been inspirational to the Down syndrome community both across Bangladesh and the rest of the world. We look forward to spending more time with them over the next 3 years.