How is this usage significant for users/survivors and their caregivers?
There are many terms (i.e. those which do not invoke raised eyebrows) used to refer to persons who have the impairment of a ‘mental disorder’ – mentally ill, mental patients, users and survivors of psychiatry, persons with mental illness and persons with psychosocial disability, and naming someone by their diagnosis (for example, schizophrenic), to name a few.
In general, the ‘person first’ belief has heavily influenced the disability movement and the labels that the movement have chosen to adopt. Within the social model of disability, it is preferred to identify an individual as a ‘person first’ and not as a physical manifestation of an impairment. Therefore the term “person(s) with disability” which also finds mention in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
Though the CRPD clearly speaks of “long-term physical, mental, intellectual or sensory impairments” in its inclusive definition of “persons with disabilities”, it is notable that the document does not mention specific impairment groups or ascribe labels to these groups. A history of the negotiations of the CRPD will show that the ‘World Network of Users and Survivors of Psychiatry’ took part in the proceedings on behalf of the community. One does not find much identification as a ‘user and survivor of psychiatry’ outside of advocacy circles for several reasons – in the Global South, in particular, much of the population does not have access to psychiatry to qualify to be a user/survivor. Also, the idea that psychiatry is the only interface for persons who have mental disorders again plays into the medical model of focusing on ‘fixing’ the individual.
The reason why the term ‘persons with psychosocial disability’ is preferred to ‘persons with mental illness/disorders’ is because the former is more in spirit with the social model of disability, placing the focus on the barriers being created which impede a person’s participation in all aspects of life and society. Having said that, another cherished belief of the disability movement is "nothing about us, without us”, which involves the opinion and wishes of the stakeholder in all decisions that involve them. This would also include the identity that they are to be known by. Many persons who have experienced mental disorders do not identify as persons with psychosocial disabilities as they do not believe that they have faced barriers on account of their impairment, or perhaps they have reached a stage of recovery where they do not face any barriers.
As a person who is currently experiencing a mental disorder or who has had an experience of mental disorder, we all have the right to determine how we wish to be labeled or indeed, if we wish to be labeled at all. Several members of the community have reclaimed the term ‘mad’, and associate it now with ‘mad pride’, on the lines of the LGBT community reclamation of the term ‘queer’. Consideration of the term ‘psychosocial disability’ has been very empowering for many persons who have experienced mental disorders, because it helps them understand that they have a right to expect acceptance, accommodation, and non-discrimination from the world around them.
If you are a professional or caregiver for a person with psychosocial disability, internalizing this term can help draw focus on the individual’s choices and rights and ways in which to accommodate their experiences. It is not just a question of labels – in a recent study, participants showed less tolerance toward people who were referred to as “the mentally ill” when compared to those referred to as “people with mental illness.” Changes in language might precede changes in mindsets.
Amba Salelkar is a lawyer based in Chennai, with a special interest in disability law and policy.