Families and Self-Advocates in India talk about Decision Making

5In June 2013, Anna MacQuarrie, II’s Director of Human Rights, Policy and Global Initiatives, and Natalia Angel , II’s visiting scholar on decision making, visited India to meet with Parivaar (II’s member in India) and their members about their efforts to advance the right to make decisions in India.  In addition to meeting with Parivaar’s leadership, Natalia and Anna had the chance to spend time with families and self-advocates in Kasargod and Kochi, Kerala, on II’s global campaign The Right to Decide, and Parivaar’s supported decision-making project.

Families involved in Parivaar’s supported decision-making project demonstrated a deep understanding of the value and importance of supported decision making and the conditions that need to be in place to make it work.  Many parents shared stories that as a result of this project they are now consulting with their sons and daughters with disabilities on decisions as they would their sons and daughters without disabilities. One father shared that as a result of the project he changed his will to include his son with an intellectual disability.  Another said “before this project people didn’t know [people with intellectual disabilities] had rights.”  A mom expressed that “when people are supported from a young age they grow to be strong-confident adults.”  In expressing the impact having control in one’s life has, one father said he wanted his son to be part of the supported decision making project because “it allows me to make him free.”

Self-advocates talked about wanting to have control in their lives.  “I want to speak up” said one young woman.  One participant said “when I get my salary, I will handle it myself.”  Another said “I want to marry a girl that is employed.”  A young woman explained how her mom has listened to her decision to live more independently and is helping her to do this.

A professional in Kasargod said “I’m very happy to see this happening.  Until now it has only been in the text books.”

The discussions in India also highlighted the challenges in advancing the right to decide for people with intellectual disabilities. In particular:

confusion about meaning of supported decision-making

  • supported decision-making is misunderstood by many.  It does not mean supporting any decision regardless of impact/consequences; everyone’s decisions are defined by our realities.

decision-making distinct from behaviour

  • socially inappropriate behaviour are not a reason to deny people the right to make decisions.

Limited decision making authority for all

  • many people – in particular women – have limited legal capacity in India.  Very few people – whether they have a disability or not – are making all of their own decisions.