There are some key themes emerging from the eight project strands of D4D as the program of work develops. What follows is Colin Hambrook’s summary interpretation of a conversation had by members of D4D on Monday 11th February at a team meeting at the New Vic Theatre in Stoke.
Photo by Sabeel Ahammed. Copyright-free photo from Pexels
The D4D project started with a commitment to identifying and understanding the barriers that prevent disabled people from achieving agency in society. We wanted to ask questions about how disabled people shape meaningful communities that allow for choice and engagement – and to frame this in a way that looks at the realities of disabled peoples’ lives.
In the initial conversations from the beginning of the project Sue Porter proposed that the work that emerges should be challenging and troubling. We recognise that the position of disabled people in society has become increasingly harder especially over the past decade. With that in mind, how have barriers changed with time? What does inclusion and marginalisation mean for disabled people now in comparison with 20 years ago during the era when disability legislation was first introduced.
D4D comprises a set of people working within academia and within the arts. Although many of us identify as disabled people, we are aware that, when we talk about claiming an identity, that is in and of itself a problematic idea that presents challenges for the wider community.
We are in a position to access degrees of privilege where large factors within the disabled community are isolated and without a voice to present their experience. The choice to identify as a disabled person is not straightforward and is often complicated by the constraints of a disabling system.
We talk about ourselves as a community of disabled people, and locate ourselves within one or other communities, accordingly, but people understand what disability means in a variety of ways, depending on the impact and the pressures that disability presents in our lives.
Disabled people often live a precarious existence for a wide range of reasons. In terms of access to welfare support peoples’ relationship to disability is summed up through a mechanistic, polarised, binary idea of what that identity means. If you score enough points on the system the computer says ‘yes’ and if you don’t the computer says ‘no’. The process often involves having to show the worst of yourself, which creates a tension between how you are being asked to see yourself and how you actually see yourself in relationship to the world.
So for example, one criteria in the welfare assessment form asks ‘have you ever upset someone?’ Judgements around either causing offence or being offended are set on a points system, traumatising individuals through layers of intimidation used in what purports to be an objective measure. Parents and carers upon whom the task falls of answering these questions are effectively placed in a position of being coerced into what can only be conceived as a form of betrayal.
The Victorian idea of the deserving and the underserving comes into play in an arcane and convoluted system set up to stratify the Disabled community along medical lines – dividing those who can cope with the benefits assessment forms and those who cannot. The system lays out options to either conform and comply, or be excluded. Either way there can be a sense in which you are subject to a form of punishment, claiming receipt of ‘benefits’ under a cloud of judgement or perhaps deliberately answering questions with a negative response to retain dignity.
Understandably some people, left with no choice, will identify with disability in order to get access to welfare benefits, but otherwise will not see disability as a positive and will not identify with disability in any other areas of their lives.
If you get what you want or need from within the welfare system afforded by the State, there is a point at which you have to commit to buying in to the system and it can feel like you are being asked to sell your soul. Questions of eugenics and the right to exist come into play as the scales are set. There are levels of dehumanisation involved that create a series of complex issues around either labelling yourself or being labelled, that encompass existential concerns at a deep-rooted emotional level.
On an alternative measure, Disability as a political identity can subject the individual to further stigma. The disability movement has reported incidences where the police are giving information to the DWP about disabled activists and the anti-terrorism act is being used as a tool for intimidation. Bullying runs through the system. It was not without reason that the United Nations called the British Government to task for human rights abuses in 2016.
Being put in the ‘disabled box’ by the rest of the world can seem like the ultimate mark of invalidation. It is often presented as a positive when you’re told “you’re not disabled”, and you might receive some approval if you agree, but you can then become isolated from other disabled people and communities that can offer affirmation and support for the struggles that you have to negotiate as a part of your daily life.
In making the decision to identify as a disabled person you have to find your way to a different understanding of what disability identity means. Within the wider disability community people often talk about disability as a journey. Growing up with an impairment and identifying as a disabled person are often two very separate events sometimes decades apart.
Much of the D4D programme encompasses aspects of the Arts and again, developing an arts practice and positioning yourself as a disabled artist involves a complex set of ideas. Identifying as a disabled person and as a disabled artist can be a parallel journey to that of identifying with disability in a positive and political sense. Understanding disability as the lived experience of barriers can positions you beyond the vicious circle of fear and fragmentation that a disableist society presents as the only option available.
In dialogue with groups of disabled artists the impact of austerity and questions of being subjected to hostility have invariably come up immediately through several of the D4D programmes, sometimes confounding expectations. All of the artists worked with have had different ideas about how they want to be identified. Invariably they reported not having either space or opportunities to have their voices heard. A lot of expectation is placed on the idea that making disability arts means making work that is about overcoming adversity – identifying disability arts with overcoming adversity and what has come to be known as inspiration porn, in opposition to our social model understanding of disability.
Disabled people are not afforded the same rights to heterogeneity as non-disabled people. In understanding the place of disabled people, society will often turn the conversation to talk about eradication of disability as the answer. Much of the scientific literature being researched talks about genetic initiatives that are down to the subjective concerns of individual academics/ scientists, as if the answer to the problem of disabled people is to ‘cure’ us; within a construct which sees the idea of ‘compassion’ being co-opted into a neo-liberalist agenda.
Rather than being understood in terms of time and resource and relationships, an individuals value is reduced to the idea of the cost that they represent to the State? The arbitrariness of this position goes unquestioned. And if you are seen as costing too much the value of your life is negated, conforming to the rhetoric of the market. The lens through which society views disabled people is the cheapest kind of understanding (to coin a phrase from the title of Steph Harvey’s PhD title): the cheapest in terms of economics but also at a personal level in terms of the worth of your life.
Given the difficulties in identified as a disabled person we understand the importance of creating silos of safety, having somewhere to go where its not just you pinned against the wall. The question emerges how do we organise a collective front? How do we move outside the trap of seeing ourselves in the role of victim? How do we represent the strengths that disability can afford?