In search of a label

There have long been calls to stop labelling children as having special needs.  Department of Education figures released in 2012 show that 19.8% of pupils in England have special educational needs, of which 2.8% have statements of SEN.  And yet school inspectors Ofsted suggest that the term SEN is used far too widely and that many children labelled as SEN would simply benefit from “better teaching and pastoral support”. Conversely, the current policy climate, particularly in relation to Disability Living Allowance, appears to be pushing a harder and harder line whereby the application of the diagnostic label is the primary issue in determining whether someone will receive welfare benefits or support. This situation creates a schism between social and political spheres; whereby socially, people seek to resist being defined by a label, but politically, they need to be defined by that same label if they are to access much needed support services.  The implications for resistance to a rising tide of medicalisation are obvious, but this climate also has implications for the disability rights movement.

Sociologists suggest that behaviour, self-identity and the way that people are regarded by others more widely are influenced by the labels that we use to categorise people.  Labelling theory was developed through the 1960’s and 70’s and largely used to try and explain the behaviour of minority groups.  It was picked up by medical sociologists in relation to medical diagnoses and long term conditions in the late 1970’s and tied in with Goffman’s work on stigma.  Scambler & Hopkins, for example, used research on people with epilepsy to show that the label conferred on people at the point of diagnosis changed the way they perceived themselves and led to the development of a range of behaviours around managing their identity as a ‘labelled’ person.   Similar work has explored other long-term conditions such as multiple sclerosis, arthritis, diabetes, and Parkinson’s’ disease.

Within disability studies there is a large body of work looking at the labels used to describe disabled people, showing that the way we understand and talk about disability affects the way that disabled people are seen and treated and the support made available, as people orientate their behaviour to the label and make assumptions based on the label rather than the person.  Mike Oliver’s groundbreaking work ‘The Politics of Disablement’ outlined the importance of labels and language and this has become a central stream in disability theory and activism against the imposition of exclusionary ‘norms’ and value judgements.  In a previous post I argued that media representations of disabled people and disability affect the way that disabled people are viewed and treated by the general public and that current perceptions of disabled people as scroungers can be linked to the documented rise in disability hate crime.

Any yet, as the mother of a deaf child with a statement of special educational needs who receives a range of support within a mainstream school, I am aware of the importance of labels in accessing support.  And I am not alone.  Many parents are actively seeking labels for their children, often with some misgiving at the idea of labelling their child, because it is virtually impossible to access support, services and funding without a label.  Disability Living Allowance, SEN support in schools, travel, attraction and cinema discount cards, and access to equipment funding schemes all hinge on the production of a label.  And just having a label is not sufficient, the right kind of label is needed where possible, preferably a straightforward, relatively static diagnostic label backed up with medical evidence.  Ambiguous or fluctuating symptoms make the result of labelling less concrete and often make it harder to access support.

This leads to a situation where disabled people and the parents of disabled children are fighting for the very labels we are told we do not and should not want.  And conversely, it has been argued that the language of inclusion championed by the disability rights movement has also been purloined and is being used against the most vulnerable.  In a recent paper presented at the British Sociological Association conference, Nick Watson used a phrase first suggested by Grayson Perry to suggest that the disability movement finds itself in a position of ‘subversive compliance’.  By this he means that the current government and right wing politicians are co-opting the language of the disability movement to challenge the need for disability benefits, making the case, for example, that active wheelchair users do not need mobility benefits, taking the positive label but disregarding the additional expense, time and equipment that may be needed to navigate when using a wheelchair.  Or using the undertaking of paid work by disabled people, long championed by the disability rights movement, as a measure of inclusion, promoting the idea of participating in society and of not being a burden whilst side-lining those who are unable to work or to compete in a competitive marketplace.

Diagnostic labels can be negative and damaging if they are linked to public perceptions about those carrying that label, and positive empowering labels may be damaging for those unable to live up to them.  But labels don’t have to be negative.   A lot of work has been done by minority groups in reclaiming labels and redefining minority group status.  There is plenty more work to be done but while labels are a necessity for many of us seeking support and services for ourselves or our families, we need to continue to fight both for positive recognition of these labels and the groups that they purport to represent and against the exclusion of the most vulnerable by those wishing to misuse positive labels.