Carer's perspective and interest is not the same as users'.

One of the most important outcomes of the first day of the National User Workshop was that the care giver group (who attended the first day of the three day event) understood and expressed that care givers' perspectives and interests are not the same as users' interests and perspective.

This discovery came up as part of an interactive group session, in which participants were asked to consider everyday situations and decide whether that was something they would have liked for themselves or not. Then the groups were asked to deliberate on wether the situations they would prefer for themselves is typically present and accessible for users of psychiatry in India. If not, why not? Similarly: are the situations participants saw as undesirable typically part of users' life? If yes, why?

Life situations elaborated upon in the session included:
  • People help you in ways you don't like.
  • Being able to decide about your holiday programme.
  • People don't believe what you are telling them.
  • Doctor talking about your health to your relatives not even looking at you while you are there.
  • Your opinion about a service is regularly sought for.
Many participants, typically the care givers, felt that users should accommodate the expectations of the larger society or otherwise they will fail in becoming equal members of the community. For example, if they do not get used to wake up early in the morning, they will likely loose their jobs, in spite of the heroic efforts on behalf of their care givers to mediate between the user and the employer. This observation gave an opportunity to talk about reasonable accommodation and that the UN Convention on the Rights of Persons with Disabilities clearly identifies denial of reasonable accommodation as discrimination. Not the person but society needs to accommodate settings, environments, procedures so that people with disabilities can equally participate. Later beginning of working days, flexible working hours are examples for reasonable accommodation users may demand in the employment context.

Some participants had more than one identity: they were both carers and users themselves. It was interesting to see and reflect on how these identities interacted in the same persons' minds. A young psychiatrist came to the workshop as a care giver, then understood that his user identity was stronger and continued his participation and valuable contribution on the following two days.

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