Movements are messy, complex networks of individuals and organisations that rely on different technologies to reframe and address the micro-politics that affect our social world. We should be wary of assuming that social movements are organised according to a prescribed life-cycle, such as the one offered by influential sociologist Herbert Blumer, or that they seamlessly begin with individuals united in a particular vision, openly sharing allocated resources and supported by established structures.
To ensure a contemporary health movement incorporates the demands and views of disabled people, there must be meaningful and effective engagement with disabled people. This is paramount if we are to address the political and social struggles that currently reinforce our exclusion and exploitation. This kind of engagement goes beyond basic consultation or the adoption of sterile co-productive methods and disingenuous feedback opportunities - it requires the inclusion of (and support for) disabled people and their user led organisations, in order to secure a "possible, probable and preferable future". Whilst this may appear common-sense, it rarely translates into common practice – there is a reason that the Disabled People's Movement uses the phrase "Nothing about Us, without Us".
As an academic and activist working in disability studies, I have evidenced the influence the discipline has had on shifting our understanding of disablement. Originating from the roots of medical sociology, disability studies seek to explain and plot the trajectory of disabled people's experiences as individuals and collective members of society. It challenges the historical and contemporary assumption that disability is, predominantly, a medicalised issue that requires professionals and treatment interventions to address the barriers experienced by disabled people.
The Disabled People's Movement is associated with the social model of disability, which explains disability as a social condition; a consequence of the way society is constructed by those with substantial power. Consider how an individual with a mental health condition can be stigmatised by their community, or how a person with a learning disability is denied the right level support to participate as a valued member of society or why a wheelchair user cannot interact with the built environment because it was designed for people who can walk.
The barriers that emerge through these three examples are not a direct consequence of an individual's health, impairment or learning ability - it is because we fail to build an inclusive environment, challenge negative attitudes or develop policies to improve disabled people's quality of life.
To address disabled people's marginalisation, exploitation and oppression, the development and implementation of policies must reflect the principles of independent living (as defined by the Movement), and we must challenge the uneven, unstable and fluctuating relationships that produce the social world.
If a health movement is to benefit disabled people's journey towards emancipation then those involved must reflect and revise their approach. To start with, I would borrow from the work of the influential scholar Michael Oliver, who outlined the requirements to conduct emancipatory disability research. For the purpose of this article, the conditions he identified can be summarised as follows:
- experience is recorded from individuals own perspective
- the outcome should be helpful to the policy-making process that improves life conditions
- all activities should address the political struggles affecting disabled people
These three conditions must form the basis for progressive social change, especially in a health context. Although there has been extensive literature focusing on the opportunities to develop effective pathways, care models, personalisation agendas and peer support initiatives (among other things), there is a danger that our thinking is skewed by the ideals offered by those that have colonised the expectations of the future.
Economic and political events, corporate agendas and consumerist culture affect the way we see ourselves. Disabled people rely upon government policy and practice to navigate and access daily living. This means that disabled people’s perceptions of themselves, their social position and status are influenced by, and often reflect, the dominant narratives associated with service provision and the objectification of our bodies by professionals.
Social movements should not necessarily resist current practices, they should revolutionise our thinking. It is about making us feel simultaneously uncomfortable and excited, disrupting our sense of normality, and challenging what we previously thought was acceptable. Our current health system and structures are a product of cumulative events that reinforce inequality and marginalisation for disabled people.
A social movement focusing on health must recognise that current practices continue to affect disabled people's value and worth to society. Change can happen, but it will appear uncomfortable for some.
Miro is an academic and human rights activist; he was a UK government adviser for 6 years and has worked with the European Commission and non-governmental organisations across the globe.
Follow Miro on Twitter @MiroGriffiths
Anthony Painter argues that the state expansionists will win over small statists as healthcare expenditure is destined to increase. But their victory may be a Pyrrhic one unless the growth can be limited so better support can also be given to housing, economic security, education and lifelong learning.