Katharina Pförtner, Global Advisor for Inclusive Education and Regional Advisor for Community Based Rehabilitation, based in Nicaragua writes about her experience while participating in the Inclusion International Conference ‘ Shape the Future’ held in Orlando USA in October 2016.
The Inclusion International Conference ‘Shape the future‘s’ main goal was to create a Global Resource to support Self Advocates with intellectual and developmental disabilities (I/DD). Under the headline: “Nothing about us without us” around 900 participants from USA and around the globe came together (I met participants from over 24 countries!)
The discussion in the different workshops and presentations was intense and inclusive, Self-advocates were all around, demanding their rights and easy to understand communication. During the Self-Advocates´Summit 80 men and women with intellectual and developmental disabilities met and elaborated their demands and goals to continue working in the future. The meetings were facilitated by 12 self-advocates from different countries. There was a large group of self-advocates who could not participate (mostly because of high costs for travelling, conference as well as logistics fees) and sent their comments and videos online to the coordinating office.
One of the central points appearing all over the discussions was: how can we conclusively translate the rights mentioned in the UNCRPD (like the right to participate in the community, vote, live independently, receive inclusive education etc) to something concrete on the ground? how do make sure that “No one with I/DD is left behind”?
To do so, first we have to create the following conditions:
- Strengthening self-advocates and their organisations around the world
- Challenge negative attitudes wherever they appear
- Raise the voices of persons with I/DD and publicise their achievements, demands, experiences, etc. and include them in the international discussion
- Collect Data (disaggregated by gender, age, disability) with regards to health, education, employment, social inclusion
- Analyze the situation in justice systems in different countries and publicize instances of exclusion from justice for persons with I/DD
- Include self-advocates in decision-making units, for example Sara Pickard from Wales (a women with Down Syndrome) is part of the community council in Cardiff.
For this empowerment education plays an important role: Inclusion International plans to create “Catalysts for Inclusive Education”, trying to build alliances with other organizations working in this field and coordinate experts for publications and campaigns in order to oppose the latest negative movements calling for revision of the ideas of inclusive education. In my opinion publishing good practice examples is one of the most important steps for all of us ahead.
We should all connect our work on the rights of persons with disabilities, including the persons with I/DD, raise awareness in CBM, partners and alliances, initiate Self-Advocates groups and strengthen them in the different levels of our work. It is important to focus in our activities and discussions on this issue, to make sure that persons with profound I/DD are included in all spheres of life.
I would like to share a story which left an impression on me: Ethan Saylor was killed by police officers in a cinema because he did not want to leave; he wanted to watch the movie a second time. He had no ticket. The officers were not able to understand him, he was thrown to the floor and with the three men on his chest, he could not breathe any more. His mother started meetings and campaigning against this injustice which killed her son. She succeeded in initiating a commission where police, justice, self-advocates, parents, politicians discussed much needed changes. This resulted in a training which all police officers will be participating, where self-advocates are included as facilitators.
I leave you with some strong statements from participants at the conference:
- “Normal is boring, who needs to be normal?” “Unboxing” is needed.
- Independence means different things in different cultures, does not mean to be alone, but to have control about one´s life.
- Make sure that people matter and their voices are heard. Self-advocacy starts at birth.
- Legal capacity is not about mental capacity; it is about power over ones decisions, preferences and will.