Exploring Accountability

Human Rights and Legitimacy from a Disability Equality Perspective

Acknowledgements

It takes a village to grow a child… it took a city to sustain a PhD student.

I thank those who joyfully gave time to answer my questions, without them there would be no words.

Abstract

As a global issue matters of sustainability rarely give Disabled people a voice in a world-wide conversation.
More generally, issues of disability are rarely stated from the perspective of its discipline Disability Studies.
As a group, the disabled population are ignored, which cuts their voices out of many debates.
This silencing is most evident in the textual world, where misrepresentation articulates them as untrustworthy group of speakers. Furthermore, they are not recognised as authors, thereby denied a voice as writers of knowledge in documents that reinforce their marginalisation.

Living on the edge of the edge

The image of the earth as a marble was a defining point in history, for many it was the first representation of the world as a single entity.  In my minds eye it serves well as an image of connection, between planet and people, and between the environment and society.

The marble shows the indivisible nature of man and world, the sense making expressed in language and accepted as culture. Words spoken about our lives that may become significant snapshots when we look back.

I felt Disabled people should belong to this evolving narrative. Storytellers on earth, part of its life, its  story, and its action. One of the many holding its past, creating its present and shaping its future.

But many do not see Disabled people as their neighbours, they are others not to be counted. Disabled people fall outside the considered ‘norm’, the typical Joe on an ordinary bus.

Yet, when manure hits the fan the disabled population are hit the hardest. Struggle as they may on the edge, big stories typically push them beyond sight.

Textual worlds: stories

In conversations shared stories fail to speak for everyone, this silencing is characteristic of the marginalisation of disabled people’s interests in matters of globe/local concern.
Ableism is the name of this character, the distinctive oppression disabled people face, which like racism or sexism, it is imposed on a whole group within the population.
As a representation of conversation, texts define a meeting of language and culture in which accountability can be expressed legitimately as anti-ableism.

Accountability, legitimacy and the civil rights movement

Accountability demonstrates a willingness to first acknowledge civil rights groups, and then (re)present the voice of all groups in society. This presentation needs to be accurate, not distorted, with each group’s interests shared in word or image.

legitimacy theory helps us to look at whether group interests are presented with accuracy, therefore a sophistication is needed, which involves looking beyond organisational boundaries.

An organisation’s commitment can be explicit in their ability to speak of their interests and keep anti-ableism at the heart of purpose.

Webs: Culture and language

The web motif gives shape to the intertanglement of life on earth. It can represent culture on global, institutional, sector and organisational level. It can frame conversations, cultures, systems, and numerous many relationships inter-locking and interrelated.
Culture and language appear in texts in these webs:
The webs of relationships within organisations;
the webs of significance represented in culture;
the webs tying meaning to words to the action in dialogue;
the web of conversation that add divergent ideas to  accounts,
the webs of concepts connecting theories to people and their feelings;
and the webs of ideas linking vision to anticipation.

Storytelling: individual voice, group authority and shared narratives.

An intentional sensitivity arose from the research constraints, because in mapping the terrain - the knowledge base – I found that the voice of Disabled people is often misrepresented in text. Privileging individual narratives but erasing ideas, theory and interests in language.
Epistemic injustice, explained as ableism, in research and society, is a distortion that explains a storytelling that speaks to 5 myths the silencing of the disabled population.

Working wisdom: Deviant by design?

Personal experience cannot answer the question, not because it is limited, but because making private thoughts explicit can be harmful – contribute to ableism.
Being an activist, has critical relevance within the research design, because who gathers data, analyses it and disseminates it is a power issue.
Furthermore, a knowledge base of Disability Studies helped examine culture and language, the storytelling, to give insights into why Disabled people as a group are not heard.
Therefore, defining working wisdom is not about striving for neutrality but being explicit about subjectivity  - by acknowledging authorship not penship for example.

Human rights:  Tiers of harm - narratives of injustice

Global narratives, show a lack of nuanced terminology to describe the north/south effects of globalisation led by economic inequality, and the great size of the disabled population, making the experience of disability a product of unsustainable growth.
National narratives within domestic debates that tend to flatten a far more complex articulation of community that has a bearing on the interaction between identity and group membership.
Market narratives that conflate issues of business with community interests and thereby extend dominance over the disabled population in matters of relationships and citizenship.
Non-representative narratives influenced by market ideology, that further pushing disabled people into the consumer role of passive recipient of the commodification of services.
Finally, personal narratives rather than individuals that become stories stripped of the above layers - ones that focus on vivid cases or particular crises that are then skewed by the likeability or heroism of the disabled storyteller.

Dis-tory

Disabled people’s history is often told –if al as a dark and murky affair with much shame linked to their segregation, institutionalisation and sterilisation.
It is hard today, to view history as having the colourful threads of Disabled people’s tales, because reality only reveals itself in existing distortion of a present-day lens.
Thousands of disabled people have lost their lives fighting for visibility and equality − a right to education, a right to work, a right to a life in community, and a right to a family life.

The Disabled people’s movement

Political power, strength and theory

The social model enables us to place our experience of disadvantage in the context of how individuals, organisations and institutions interact with us. The medical model places the focus entirely on how we experience our impairments. (Morris, 2013)

Web of accountabilities

The visit: Bathing the room in sunshine

People natter!  Writing in the Field:

In the chair: writing in the library 

It was time to make sense of the story, informed by the words found in the field.
Answering the question: ‘What struck me?’ a text soon emerged, telling of the organisation’s culture.

Talking up radical hospitality

It struck me that as a community of practice, the whole worker group acts as a buffer, helping to slow down the seemingly relentless pull towards a pared-down notion of financial accountability.

Talking up citizenship

It struck me that accountability - defined as a conversation stretching further to articulate people’s future as citizens - goes beyond viewing them as clients. A civic dialogue, therefore, is a difficult one to expand on where more widely society understands accountability as little more than cost efficiency

Talking up choice

Proximity led to a closeness within their relationships that helped empathy; workers acted as mediators, particularly for those who have been maltreated and abused in the past, restoring option and creating space for choice.

Talking up control and wellbeing

It struck me that a business narrative that failed to qualify wellbeing, or articulate discrimination outside the organisation, placed huge expense on workers by pushing them into conversations about money that fell short of a financial dialogue within the web of accountabilities frame.

Talking up anticipation

It struck me that workers were able to identify the private and public boundaries many do not acknowledge, in order to work across them in order to break down barriers to more ordinary relationships.

Pot structure

Words for our worlds!

This has aimed to make explicit the meaning behind words that offer a tacit resistance to dis/ableism using dimensions of investment that appear to be the culturally accepted as a norm at ReShape. The Five Ps provide an alternative choice in words and phrases that articulate inequality, institutional discrimination, privilege and personal choice. The section on craftivism draws the dialogue themes and languages together by returning to the idea of a complementary non-financial accounterability 

Account-telling as craftivism

As the visit shows, workers demonstrated this talent in conversations that toggled between numerous languages. Their stories had a craftsmanship that appeared easy.
Their accountability was implicit, in the way they explained the limitations, demands, and processes of the system to their clients, instinctively crafting their responses in a language that articulated = understanding, empathy and love.

Anti-ableist theory

Theory could reflect a more anti-ableist intent to articulate a movement beyond the domain of disability studies. In this example, applied to legitimacy theory, in the explicit and implicit terms of an imaginary social contract. Identified below is a breakdown of trust where reputation lacks any acknowledgement of disabled authors or the interests of the disabled people’s movement. This demonstrates a lack of legitimacy in organisational accounts within mainstream storytelling

Theory needs to inform thinking. As Oswick et al. put forward, a radical travelling theory is one that moves beyond its own domain of production to be adopted by existing ones with equal measure. Theory that adopts anti-ableism in its intent, therefore, needs a broad applicability and relatively abstract content; so that it can effectively begin ‘a process of repackaging, refining, and repositioning a discourse (or text) that circulates in a particular community for consumption within another community’ (2011, p. 323). Where legitimacy theory can be defined as the ability to respond to the disabled people’s movement as a civil group it will need to demonstrate an intent to address their interests through dialogue (Deegan & Unerman, 2011)

Final threads

I undertook this research because, as a trustee of 3 organisations I was continually baffled by the lack of reference to the Disabled people’s movement, Disability Studies or Disability Equality.
It struck me as unusual that while people were sometimes fluent in their references to feminism, they had no language word anti-ableism similarly. You could put 10 feminists in a room and get 10 definitions, but that man on the omnibus could not put words to the toxic nature of his pen when omitting Disabled people from his storytelling. More widely when it comes to the lives of Disabled people, their stories remain an unknown telling for many. Furthermore, in academic texts, where you would expect Disability Studies to be drawn on, writers often ignore, reinvent, or misrepresent the voice of Disabled people.

I came to the topic with a fair bit of evidence, wisdom and experience, however, nothing prepared me for the scale of the findings: the huge injustice so many people endure. Furthermore, the sheer lack of words missing, that make debates that are complex and nuanced skewed and harmful. Everywhere I see disabled activists shut out of conversations about the world, then further discredited by those who refuse to trust their hard-earned knowledge.