Who am I?
Who am I, is a very loaded and contested question for people with disability. A question of identity.
For decades people with disability have had this personal question answered by others. Their identity as a person with disability has been described and viewed by people without a disability. I was prompted to think about this by Andrew Solomon as I read his book, Far from the Tree. An inquiry into identity, or more rightly identities; how some children are born with an identity that sharply contrasts with the identity of their parents, or the identity that their parents wish for them.
Andrew Solomon looks at groups of people who fall ‘far from the family tree’ and how they relate to their families and the community. The groups that he looks at include people with Down Syndrome, people who are deaf, people of short stature and people with multiple disabilities. A fascinating book from a man who himself fell ‘far from his family tree’.
Andrew Solomon uses the concepts of vertical identity and horizontal identity as the framework for his discussion, the vertical being the family, the horizontal being the person’s peer group – those others who they identify with as being members of their community.
Identity whether defined by us or others is closely linked to the language we use to describe ourselves or others; it is language which includes, affirms my identity as a member of my community or excludes me from my community by segregating me or hiding me from public view.
Over the last 10 years identity has become a crucial issue for people with disability as the conceptualisation of disability as a medical condition to be fixed/cured was challenged by the social model of disability which attempted to describe a person with disability as an interaction between the disabling aspects of society and the impairment of the person. The emphasis became not on the person with disability but on society and the identities of people with disability became subsumed under a generic catchall ‘people with disabilities’ as the focus was on society. This strong reaction to the medical approach was needed to bring about the conceptual change that was necessary but in the creation of the vertical ‘disability’ identity people lost the horizontal connection with their peer group, with people who have the same distinct life experiences as themselves.
The social model of disability is now being challenged by the human rights framework that is asserted by all people who are ‘different’. Whether it is a question of gender, race, sexual orientation, etc, the right to be different and to be accepted as different (no matter how far you fall from the tree) is a dominant movement within our society and people with all types of disability are members of the movement, the right to be different.
When ‘disability’ becomes the dominant identity, as opposed to a person with Down Syndrome or a person with autism, what happens is that they become invisible. Disability is represented by the articulate person in a wheelchair, the media get comment from the blind person who wears a suit. The come to represent all people with disability and other groups become invisible. This is not to say that people in wheelchairs or suits do not have a role or right to speak but that right only extends to their experience as a person who uses a wheelchair or who is blind. A person with Down Syndrome, for example, has a right to speak on their own behalf about their life experiences.
The language of rights is different to the language of the medical or the social. Discrimination is experienced in the real lives of people. The experience of discrimination is personal and can only really be shared by people who have the same expectations, perceptions placed on them by others. Discrimination can not be defined or explained by medical terminology or broad social references only by the language of lived experience. As a community it is our responsibility to listen.
The use of old medical and social language will not be easily replaced. Just as there was not an acceptance of the change from medical identities to social identity the assertion of a right to define my own identity will be resisted by those who are unable to accept that people with disability have a unique voice or who will be unable to reliquish the power that comes with controlling the identities of others.
Just as homosexuality is no longer defined as a mental illness people with disability must not be defined as ‘diagnostic’ groups; just as all people with a different sexual orientation are not longer defined as being part of a generic homosexual/gay group but as as gay, lesbian, bi-sexual and transexual, people with disability must be defined by their lived experience as a person who is blind, as a person who uses a wheelchair, as a person living with intellectual disability. (1)
It may be convenient for the media and governments to see people with many disabilities as a homogenous group (or to narrow them down into acceptable social groups) but this is not their decision to make and we must give all peoples the right to define ourselves and who we identify with. How we measure the distance we ‘fall from the tree’ and who we ‘fall with’ is up to us to identify with.
(1) the analogy of race could also be used, from immigrant, to ethnic, to Greek-Australian; as the lived experience of different groups is not identical. There will be some similarities but there will also be differences and within a rights framework these must be acknowledged.
Editorial from Interaction Volume 24 Issue 4 – subscribe