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.

Invisible Leaders: and sometimes a cool cow!

I'm overjoyed to introduce Dr Galdames, with a blogoff this week!

A great big welcome to "Blog Off - an invitation"

Thank you Sergio, I needed your words today.

The Rise of Millennial Headteachers 

 

For the last six years, I have been exploring the relationship between age (or generations) and leadership. In particular, I am interested in challenging the assumption of the right age to be a headteacher. My research adds to a larger body of knowledge that challenges, among others, the correct gender, race and faith of a school leader. Think for a moment, when you imagine a headteacher, how it looks like: what gender? Which race?  How does it dress? And for the sake of this conversation: does it look like a 58 years old white male or like a 27 years old black female?

 

While there is a massive body of knowledge about headteachers and their career, very little attention has been given to explore the generation argument (Edge, Galdames, & Horton, 2017). However, in many places, including Chile and the UK, there is an implicit, somewhat hidden correlation between age and formal leadership position. 

 

I was captivated by the age mystery, and while my PhD has helped me to understand this puzzle, the definitive answers to it are still far away. Having said that, I believe that I learn a couple of things about young leaders, particularly about their professional and personal journey into the headship as well as about their drivers and barriers. 

 

What I want to tell you in these few lines, is a summary of some of the main findings of my thesis, which I concluded early this year (just before the COVID-19 Hell broke loose). My original study aimed to compare how headteachers of a different generation or ages have built their professional career. I was particularly interested in exploring the potential differences between older and younger school leaders, or what in a generational language called Boomers (those born between 1946 and 1965), GenXers (1966 and 1978) and Millennials (1979 and 1999). I will only focus on the experience of researching the youngest cohort: Millennials. And due to the restriction of this format, I will try to keep it brief and on point. There are missing pieces on the following argument, but we can keep talking about it to infinity and beyond.

 

I. Setting the scene

 In Chile, while the average age of state schools headteachers is around 57 years, 10% of state schools are currently led by a millennial headteacher. As I presented elsewhere, this number has gradually risen over the last decade, explained in part by the introduction of different policies that changed opportunities for school leaders (Galdames, 2019). Despite some national recruitment guidelines and centralised process, each local authority (municipalities) can hire any candidate they want as a headteacher. Moreover, there are no age criteria in any local on national policy. 

 

Becoming a headteacher is a chaotic business for any aspiring candidate. While there are some minimal technical requirements, including having some form of teaching experience and vague postgraduate credentials, each local authority (about 346 across Chile) can adapt the application process and the headteacher's role, duties and responsibilities. Hence, applying for the position requires not only technical skills but also in-depth knowledge about the micropolitics of each school and local authority. My study explores the career of 28 headteachers, working in diverse cities in the centre part of Chile. None of the participants knew each other, but surprisingly within each cohort, headteacher shares a very personal and professional trajectory. I will speak now about some of the features of the millennial headteachers. 

 

II. The millennial journey

My first interview in this study was in a small and remote rural school. The school was located in a place where the Andes mountains touch the sky and silence was only interrupted by the laughter of children (and sometimes a cool cow).  There I met Oliver, a 33 years old headteacher who rapidly brought me into his office and with a massive generosity shared his own story. Oliver grew up poor, in this very same town. His father, a farmer and his mother, a housewife, always encouraged him to be responsible, honest and a goal-oriented. He never academically excelled at school or university but was celebrated by his tenacity, professionalism and for being friendly. Due to economic challenges, he held part-time job responsibilities from an early age. In every place he worked, he was praised for being a responsible employee, having a good relationship with peers and managers, and for introducing innovations into the workplace. While having professional success in other industries, his passion for education was bigger, and after graduation, he found a place in a rural public school - the school where we were talking. 

 

Oliver laughed when he told that he has only worked in one single school his entire professional life. This career path is an unusual feature for rural teachers as diverse studies have suggested are known for high levels of turnover. Oliver arrived at the school as newly qualified teachers; and rapidly gained some informal leadership responsibilities; a few years later he was formally considered a middle leader role; eventually, when the position was open was promoted to a deputy head; and finally, applied for the headship three years before the interview. This final step was tailored by the previous headteacher of the school, who helped him to professional prepared and guided him through the micropolitics of the headship application. For Oliver, this transition meant nothing but positives, as not only he knew the school, but also the school knew him, allowing for a peaceful and productive working relationship with teachers, students and parents. Furthermore, as he pointed out, again laughing, the previous headteacher was still working at the school as a deputy head in the office next door, taking some administrative duties and mentoring Oliver when needed (and honestly I believe he was listening to the entire interview, cheeky deputy head!)

 

While this first interview was fascinating, at the time, I thought Oliver was an outlier. I anticipated a different career for young leaders. Millennial literature frequently highlights the change of career path, roles and even industries as the cornerstone of their professional identity (de Hauw & de Vos, 2010). However, Oliver's journey moves in the opposite direction, taking a traditional path characterised by stability and gradual vertical progression in a single organisation. I never anticipated what happened next as I came in contact with other millennial headteachers. Over and over again, I heard the same history, in the voices of Selina, Barry, Clark, Victor, Barbara, Diane and William. Only one of my nine participants had a significantly different career trajectory. Some events in their lives happened in a different order, some key people change gender or age or role, some transitions were faster or slower, but overall most stories shared a set of core attributes. A very similar childhood, education, and early teaching experience that allowed them to move forward in the career with purpose and prepare themselves accordingly for the upcoming challenges. 

 

At the centre of the millennial journey is a story that far from being explained by individual effort, was a collective one. Driven by personal attributes developed during their earlier experiences and foster by a workplace and by leaders that recognise potential, the millennial headteacher's experience is about learning and growth. Initially, as teachers and then as middle leaders, the millennial cohort was encouraged to look beyond their present responsibilities, to take risks, to fail, and to learn. The possibility to exercise leadership is a core motivational component for headship interest, meaning that at least partially you want to be a formal school leader because you had the access to leadership opportunities (Galdames & González, 2016). For the millennials in this study, encouragement also took the form of professional resources, including formal professional development opportunities and networking with the local authorities. Even though the idea that millennials desire a more traditional career than anticipated is not entirely new (Real, Mitnick, & Maloney, 2010), the findings of my study show a refreshing perspective on how to support the development of younger leaders. Despite this optimistic picture, the story of the millennials also shows some of the darker elements of the leadership career and about what can we do to support leaders everywhere.

 

III. What's wrong with this picture?

I believe that a central concern about these findings is the chaotic environment surrounding the career of school leaders. While the overall experience of the millennial headteachers is hugely positive, it was built upon luck and the goodwill of diverse people. There is no policy, guidelines, nor a plan, at the national or local level to develop young leaders. The participant's experience is just the universe coming together for these eight fortunate people. But what about the rest? How many teachers, that having all the capacities and motivation, didn't find the right school or a generous headteacher to support them to move forward? 

Another central point of the young leader's career deals with the now. As I described before, the professional experience of these participants has been filled with opportunities and support; conditions that massively changed once they became headteachers. Accustomed to a space of guided learning, usually from senior administrators, most young leaders were (pause for dramatics) abandoned by the local authorities, which lacked the capacities or interest in supporting headteachers. 

 

The assumption that local authorities play a central role in creating the optimal conditions for school improvement and headteacher performance is well established in educational settings. You can't (super difficult at least!) have a good school, without a good district leader. However, at least in the Chilean context, the evidence suggests that local authorities have failed in creating the support that schools and headteacher require to thrive. Millennial headteacher seeks for learning, challenging and supporting. They look for somebody able to guide them to do better, to innovate, to take risks but also that help them when things go south. 

 

One final comment regarding young leaders relates to the fact that they are indeed young, and therefore in a particular life stage. To explain this adequately, I need to break my initial rule about not talking about the other two cohorts (Well, it is your fault, why do you trust me, you do not even know me. Sorry. Jesus! I'll try to be brief). In my study, Boomers painfully recognise that holding a headteacher role was while fulfilling, incredible time consuming, taking them apart from family and other complementary responsibilities. GenXers, express that have found some balance, but that their main challenge is economic. Many were concern with wages and the instability of the role, as their children were starting college soon, which will put a massive dent in their wallets for a decent number of years. Millennials are something else.

 

In terms of balance, most young leaders have found a way to merge personal interest with formal responsibilities. For instance, Oliver (you haven't forgotten him, right?) has an intense love for music and actively participate in the school music department as a teacher collaborator. Barry, who has multiple academic and work-related interest, has created a flatter structure in the school characterised by a distribution of power in others, which allow him to take an overseeing role, instead of implementing every activity by himself. The central millennial problem is about the intersectionality between age and gender.

 

I am not the first to address the challenge of female leaders in education. There is a rich body of knowledge addressing the multiple challenges and also the opportunities that women leaders experience. If I could recommend one reference, I invite you to read the very recent work of my friend and young female leader/researcher Laura Guihen (2017) which tackle this issue in the UK context. What is important and may be exclusive to the millennial cohort is the connection with maternity. All the participants in this study, and potentially (so sad) every school leader elsewhere, share the recognition of the massive difficult to balance having young kids and leading a school. While GenXers and Boomers have older children, millennials experience the difficult decision between career and starting a family. The three female participants in the millennial cohort illustrate the same point from a different perspective. 

 

Barbara, having two children younger than five years old, describe me in detail all the gymnastic that she and her husband endure. They have created a system, based on favours and kindness, with both family members and local authorities, to keep their kids protected and loved. Selina, having a two years old baby, was in the middle of a personal debate about the possibility to have a second one, in the upcoming year. For Selina, there is no way that the two roles, mother and headteacher, could be adequately performed, as one cancels the other. She agrees you can do both at a mediocre level, but she is not interested in that compromise. Finally, Diana thinks that both role are entirely incompatible. She has settle for a life without children of her own, arguing that every student in her school is her adoptive kids. 

 

The urgency to create better working conditions for all, but particularly target female leaders is imperative. Just these three cases illustrate the problematic experience live by the millennial headteacher, which could lead to unhappiness, workplace dissatisfaction, or even stepping down as school leader. This scenario affects current headteachers, but also aspiring ones. It is not impossible nor challenging to introduce reforms to support parents to create a more balanced career. As presented by other authors (Karen Edge, Descours, & Frayman, 2016), the introduction of distributed leadership strategies, flexible schedule, formal maternity services or even temporal co-headship, could create massive improvements. These transformations might directly improve the lives of workers but also give a sign to the system that schools care about their staff and leaders. 

 

IV. Invisible Leaders: the end for now

I titled this contribution as 'Invisible Leaders'. This label was mainly meant for me. While I have worked with headteachers for years, I was not aware of my biases in terms of how I imagine leaders should look like. Putting light into the darkness of young leaders will allow us to see them better, to understand their needs and challenges, but also the power they bring to our schools. Now it's the turn of Millennials who at this moment (2020) range between 21 and 41 years old. Soon, schools will see its first Generation-Z teachers, and rapidly after, its first GenZ leaders and headteachers. We must be attentive to the continuous rise of the invisible leader in the future. More diversity means more questions, more answers, more innovation and more hope. We need to protect them, though. Sometimes, against all odds, invisible leaders breakthrough into the system, but it should be let at the chance. We must, as educators, researchers, and decision-makers, create an environment that helps them to move forward, give signs to others that passion and professionalism will be rewarded. 

I hope that reading this story was a learning experience for you. There are many ingredients in the millennial journey that I couldn't explain with proper detail. I even couldn't do it in the 99,000 words of my thesis (minor corrections, thank you for the applause). But, from the beginning, I thought this text as a starting point of a more extended conversation. Please be in contact if you want to talk, discuss or just tell me about your own story. I can leave this page without given credit to my informal mentor 'Mole' whose career has inspired me to move forward while keeping myself authentic. As a millennial researcher, I appreciate your encouragement to take risks, to try and to innovate. Thanks for the invitation to write this piece and to publish it in your corner of the digital world.

 

My email is sergiogaldames@gmail.com, I am also in twitter @sergiogaldames, and for those crazy Spanish speakers, I run a weekly leadership podcast with a colleague where we talk some of these ideas www.planetaeducativo.cl

Hasta Luego!

 

References

de Hauw, S., & de Vos, A. (2010). Millennials' career perspective and psychological contract expectations: Does the recession lead to lowered expectations? Journal of Business and Psychology, 25(2), 293–302. https://doi.org/10.1007/s10869-010-9162-9

Edge, K, Galdames, S., & Horton, J. (2017). Diversity: New leaders and new leadership. In T. Greany & P. Earley (Eds.), School Leadership and Education System Reform (pp. 211–221). London: Bloomsbury Publishing.

Edge, Karen, Descours, K., & Frayman, K. (2016). Generation X School Leaders as Agents of Care: Leader and Teacher Perspectives from Toronto, New York City and London. Societies, 6(2), 8. https://doi.org/10.3390/soc6020008

Galdames, S. (2019). Trabajo duro, una sed por aprender y un poco de suerte: la trayectoria laboral de los directores de la generación milenio en las escuelas públicas de Chile. Perspectiva Educacional, 58(1), 69–91. https://doi.org/10.4151/07189729-Vol.58-Issue.1-Art.821

Galdames, S., & González, Á. (2016). The relationship between leadership preparation and the level of teachers' interest in assuming a principalship in Chile. School Leadership & Management, 36(4), 435–451. https://doi.org/10.1080/13632434.2016.1209178

Guihen, L. (2017). The two faces of secondary headship. Management in Education, 31(2), 69–74. https://doi.org/10.1177/0892020617696627

Real, K., Mitnick, A. D., & Maloney, W. F. (2010). More similar than different: Millennials in the U.S. building trades. Journal of Business and Psychology, 25(2), 303–313. https://doi.org/10.1007/s10869-010-9163-8

 

Reboot: disability and impairment

The Disabled People's Movement in the UK has used the term "Disabled" for many years. This terminology is preferred over "people with disabilities" to emphasise that Disabled people are disabled by societal barriers rather than by personal shortcomings. This language choice underscores the idea that oppression imposed on disabled people, and has a specific character, often manifesting as testimonial silencing in the storytelling of our experiences. While storytelling may seem neutral, the lives of Disabled people are frequently misrepresented. Authors, often unwittingly, tend to focus on personal experience and, if trusted at all, use it to replace the research evidence or the working wisdom of Disabled academics and professionals. For many, using the term "Disabled" reflects a journey of becoming part of a movement—a choice to write and co-author on shared interests, speaking with activism and intent to disrupt.

 

The way I read it, many of us still understand ‘disability’ to mean many things: an impairment, a condition, a difference, a subject, a diagnosis or a label. But, for many anti-ableists the fight is to haveableism recognised, and its character defined as the institutional, systemic and global inequality that disadvantages the whole disabled population. For many identity and personal difference is only part of the predicament we face. As the Black Lives Matter movement is teaching us, there’s more to injustice than skin tone and prejudice. Theory, policy, practice, language and culture create worlds that impose huge harm. Therefore, we need more conversations about the way social injustice moulds storytelling, in order to challenge the racism, classism, sexism, ageism, classism, homophobia, religious intolerance, that informs our ableism. 

 

Disablism can be likened to racism, sexism, and homophobia. The disabling effects imposed by society on the disabled population add to any challenges they may face due to their differences. Language is critically important, especially in public discourse, because it highlights that everyone can address ableism, whether they have an impairment or not. Being an ally needs to denote legitimacy, and is to acknowledge the storytelling of the Disabled People's movement— a voice often misrepresented because they are deemed untrustworthy.

 

Ableism, is a characteristic discrimination and a problem in society. The 'and' is really important I think, because disability is already used to mean so much. While aspects of a layered definition may appear confusing at first, once considered, the addition of a defined 'ism' to something viewed solely as a personal predicament helps make other deeply rooted issues more visible. Furthermore, when language is used to express the interests of a large group, a global population, it has power. It adds to - rather than dismisses - what is often seen as an individual’s problem. 

 

There are local variations across the globe. From a UK perspective, using "Disabled" helps articulate the leadership of D/deaf and Disabled People’s Organisations and the Disabled People's movement on matters of human rights and social justice. It highlights the specific barriers in the environment, institutional practices, disadvantages and cultural inequality. Using "Disabled" signifies that, in addition to personal differences, experiencing ableism is imposed on a sizeable group. It is important to recognise that "people with disabilities" is more often used in many European countries and the US, while "people with disability" is preferred in Australia.

 

For many disabled people, used as a verb, aligns meaning to disability theory, which is often referred to in Disability Studies as the Medical Model and Social Model of disability. The theory is important, here, because it points to issues of culture, a societal storytelling that frames disability as a personal deficit requiring medical intervention. More widely viewed as a rare in occurrence, disabled people are viewed a few individuals requiring care and/or cure. However, anti-ableist theorists work with the idea that the environment, both physical and cultural, plays a large part in causing disadvantage that is imposed on the disabled population.  As a self-referencing term, I have used Disabled, because it refers to the knowledge and the activism I gained from Disability Studies and Disability Equality.  Using it to refer to culture also means others are free to identify – or not - as it indicates a group not a network or community. Within the Disabled people's movement, as within other civil rights groups [say the Feminist movement] there are radicals, moderates and non-subscribers! 

 

As part of my Ph.D research, I read over 3000 journal abstracts on ‘disability’. I used a defined sensitivity - personal experience, research knowledge and professional wisdom - to analyse these texts. Among a growing amount of documents with disability in the title, few spoke about the interests of the Disabled population, largely if some referred to disability as a topic most did not reference existing leaders in the field or past activist groups. Examining those that had not done their homework, enabled me to identify key themes that misrepresent the Disabled people's movement’s interests in their storytelling. I found that I began to feel whether the articles reflected a shared direction, a group voice, and whether writers described the ideas of the Disabled people's movement. It was not so much the words writers used, but the meaning they conveyed that I was interested in. Even where I felt writers struggled with their wording, I could see how they sought to put a recognisable representation of political interest into words. 

 

Group strength

For many the term disabled has become positive and empowering, as it denotes the recognition of a protected characteristic (discrimination) or a named oppression (ableism). Furthermore, when the ‘d’ of disabled is capitalised it represents a choice to fight for civil rights and justice. As it can be used to convey resistance - I am disabled by attitudes; he is disabled by systems, he faces disabling structures - again these imply that being disabled is something is external to the person. Significantly this perspective aligns with anti-sexist, anti-homophobic or anti-racist views of inclusive practice, where institutional and societal ableism is the responsibility and need to be addressed by everyone. The vision of an equitable world strategic aim that requires both  acknowledgment of disablism within organisations and across institutions, with an articulation against the ableism in society’s storytelling more widely.

 

As an equivalent term to feminist, ‘anti-ableists’ are those who hold the view that ableism needs challenging. To articulated this, some activist articulate that the opposite of ‘disabled’ is not ‘able-bodied’ or ‘abled’, but ‘non-disabled’ or having ‘able privilege'.  For those working in Deaf and Disabled People's Organisations for example, the use of the word Disabled is shorthand for a political voice and shared interests. Disability is not to be banned, equally ‘impairment’ is ok, but needs to be used with nuance to talk about medical conditions, diagnosis or description of functioning – probably in more private conversation in order to respect individuality and anonymity.  

 

From a terminology standpoint, many now think that it is not up to disabled people to fight for a voice, professionals need to be more fluent when articulating dis/ableism in their work. Similarly, it is not up to individuals facing hate speech to educate professionals about racism: the onus is on professionals to speak against the character of oppression. Professionals have a duty, Therefore, a more explicit terminology is needed to inform each marginalised group. As individuals recipient of oppression need to be framed within the wider hostility of society in which they are negatively represented as a group. In the worst cases, and there are many, it may be easier to understand the motivation for prejudice in relation to wider assumptions about Disabled people, than to ask them to label or justify their identity.

 

Having said all this, history is a flow not a snapshot.  Reality only reveals itself as we blink, with the distortion of distance, it is views full of bias, ignorance and the misrepresentation of privilege through a present day lens. Disabled people’s dis-tory needs to be told, trusted and acknowledged, as an injustice without shame but with increasing clarity. More needs to be said about the segregation, institutionalisation and sterilisation of a sizable population. Many Disabled people losing their lives fighting for rights, visibility and social justice: a right to education, a right to work, a right to a life in community, and a right to a family life.  I feel blessed by the tribe, the earlier disability movement’s knowers, who told of their experience and understanding a world that that had silenced their existence. Disabled people who also faced sexism, racism, and/or homophobia. 

 

A glossary in development

Wording also has significance for empowerment, particularly for those wishing to work ethically within education, policy, and legislation in public roles. Understanding the critical difference between different terms allows a choice to talk separately and clearly about:

 

d/Deaf and Disabled People's Organisations: groups and networks run and organised by Disabled people, where Deaf people recognise themselves as a community with their own language – British Sign Language.

Ableism: a specific type of societal oppression, akin to homophobia, racism, sexism, or religious intolerance held in the language of communities and culture of society more widely.

Disability discrimination: a specific type of organisational oppression levelled directly at Disabled people, much like misogyny or religious hate speech that operates within homes, public spaces and across organisational boundaries. Disablism defines a specific type of oppression levelled directly at disabled people, much like misogyny, race or religious hate speech, that operates within groups, networks and communities of practice. 

Disabled people: individuals in receipt of ableism and org/inst discrimination

Anti-ableist: a defined position against ableism, an oppression that disabled people face specifically – like feminist or anti-racist.

 

 

 This piece has been re-written to convey the understanding I gained from recent research. Therefore, I thank those who joyfully gave time to answer my questions: without them there would be no words. 

 

Bibliography 

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Barton, L. (2005). Emancipatory research and disabled people. Educational Review, 57(3), 317-327.

Beresford, P. (2003). It's our lives, A short theory of Knowledge, Distance and Experience. London: Citizen Press / Shaping our lives.

Burch, L. (2018). ‘You are a parasite on the productive classes’: online disablist hate speech in austere time. Disability and Society, 33(3), pp. 392-415.

Campbell, J., & Oliver, M. (1996). Disability Politics. London: Routlege.

Chapman, L. (2011). A Different Perspective on Disability Equality, a practical handbook. Huddersfield: EQT Publishing.

Crow, L. (2014, 8 28). Scroungers and Superhumans: Images of Disability from the Summer of 2012: A Visual Inquiry. Journal of visual culture, 13(2), pp. 168-181.

Disability Rights UK. (2018, 11 16). Ministers and councils urged to dump ‘disability tax’. Retrieved 11 18, 2018, from Disability Rights UK: https://www.disabilityrightsuk.org/news/2018/november/ministers-and-councils-urged-dump-‘disability-tax’

Dolmage, J. T. (2017). Academic Ableism: Disability and Higher Education. San Francisco: University of Michigan Press.

Finklestein, V. (1999). Professions Allied to the Community (PACs) . Therapy Weekly, 1-9.

Frame Works. (2016). How to Talk About Disability and Human Rights. Frame Works. Washington: Frame Works.

Goodley, D. (2001). Disability and Society, 16(2), 207-231.

Goodley, D. (2014). Dis/ability Studies: Theorising disablism and ableism. London: Routlege.

Goodley, D., Lawthom, R., & Runswick-Cole, K. (2014). Dis/ability and austerity: beyond work and slow death. Disability & Society, 29(6), 980-984.

Hunt, P. (2018, 11 16). Retrieved 11 19, 2018, from The Conversation: https://theconversation.com/un-envoy-is-correct-to-call-for-greater-social-rights-protections-in-the-uk-says-former-rapporteur-106814

Kafer, A. (2013). Feminist, Queer, Crip. Indiana: Indiana University Press.

Kumari Campbell, F. (2009). Contours of Ableism: The Production of Disability and Abledness. London: Palgrave Macmillan.

Liddiard, K. (2018, 9 4). Rethinking Disability: Emmerdale. Retrieved 11 10, 2018, from Society Matters: https://medium.com/society-matters/rethinking-disability-emmerdale-a204a48094a

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Changing the world a word at a time

The idea of "creativity" and "originality " are good examples of accepted assumptions. However, the stereotype of the wise professor waking with an earth shattering idea is due some rethinking. Research suggests that new  ways of understanding the world rarely arrive overnight. More often breakthroughs are the work of huge teams, people expending effort over many decades. Furthermore, tipping points often rely on many mistake and wrong routes travelled in paths that circuitously take us towards a new perspective. My own PhD was certainly a milli-move in human knowledge, and only possible thanks to the work of numerous writers over many years. Acres of pages, gallons of ink!
 
Enter strategic aim, direction and vision, and their implication for original thought. I set myself a dream 6 years, the vision of a thesis. I had no idea, and couldn’t even imagine, what such a document would look like in its final shape. On good advice, I wrote every day, the operational activity. Occasionally the writing aligned with the strategic aim, some words drew me closer to the dream, a glimpse on a world where disabled people’s rights were honoured. However, rarely did the daily words match both good work and ultimate aim, the final document. Sadly, much operational activity was not strategic. It wasn’t that lost vision, but to align to it, I needed to be more in line with the evolving picture, rather than more exact in the technical spelling. Any 500 towards 85000 wouldn’t do, they needed to be the right words in a chosen direction, if not a correct order. My strategic ideal - a thesis addressing global inequality- kept me on track. I’m pleased that the finished effort while being a drop in the ocean is inching towards a better world

 

An original and creative tale emerged as my unique wording took shape within in a global conversation. Whether the words changed the world at all is debatable, but every letter took me closer towards an imaginary of a more inclusive and accepting culture. The words that didn't spell this culture out were not useful, they didn’t align to vision, so were deleted and rewritten. 

 

Adapted from #BlogBack: Lou Mycroft – writing, thinking, culture changing 

Thank you, Lou Mycroft, your bllogoff1 made me think: As the opening paragraph offers, very often we don’t take the effort to unthink before we step forward in an alternative direction.

Our Story. But who's words?

In my last blog I talked about the way disabled people’s interests are largely ignored in many  conversations. Conversations of global scale that can affect the disabled population more negatively than most. Furthermore, the lack of trust placed in disabled people as storytellers also means that they are written about in ways that deny their experience, their control, and the alternative ideas they might be trying to share.  My aim here to describe the way disabled people are miss-represented in tales by tellers. The character of the distortion that impacts on Disabled people as storytellers. Myths that contribute to a failure to speak up for Human Rights, thus being legitimately accountable for ending a deepening ‘crisis’ in the UK. I do not use the word crisis lightly, never has its meaning been more apt in terms of world events. As Klein puts it:

Slavery wasn't crisis for British and American elites until abolitionism turned it into one. Racial discrimination wasn't a crisis until the civil rights movement turned it into one. Sex discrimination wasn't a crisis until feminism turned it into one. Apartheid wasn't a crisis until the anti-apartheid movement turned it into one. (Klein, 2014, loc 190)

 

As stated by Deaf and Disabled People's Organisations there has been a failure to uphold the  most basic entitlement to safety. Since 2017, what has been described as a ‘social catastrophe’ by the Committee on the Rights of Persons with Disabilities UN envoy, has proved a damning call against Westminster. Devolved parliaments acted more robustly to uphold the rights of their citizens. However, the voice of Disabled people has found a place on social networks, and seems to have gained strength over the last 6 years.

 

With the last blog in mind, I wanted to share a little about how conversations are distorted. More specifically the way the privilege and power of storytelling distorts the tales presented in much public writing. I see language as an articulation of power, so put simply the more something is talked about the more real it becomes as an idea. This helped me to explore at how storytelling presented a view of Disabled people, which I found largely did not match up to individual experience or group interest. Currently these distortion seem invisible to many, so making them explicit is in itself an act of disruption.

 

I organised my exploration on 5 levels, five tiers of harm, that help articulate the layered nature of disablism [a subject I have discussed previously]. Following a hunch, I’d noticed that where feminism and anti-racist theory, for example, have provided words for institutional discrimination and global inequality, equivalent words have not migrated to ordinary conversations about disability issues.  The following explores how many talk about Disability rights without legitimacy, in conversations that shape worldwide debates, discourses, conversation, and personal interaction that impact negatively on Disabled people. Together they set the stage − the societal landscape − revealing the patterns in shared culture that go on to mould the many accounts in all the tellings of history.

 

Individual stories

Given that the experience of Disabled people urgently needs to be understood as a minimum when considering matters of inclusive practice, I find it odd how pens redraft words and reshape tales. For Disabled writers it doesn’t suffice to author in an authentic voice, word count conditional, with pages given to those who do it nicely.  Personal experience seems to be accepted, and retold, if the author sticks within the stereotype of ‘plucky’, ‘cheerful’ ‘courageous’ – positively triumphant over personal circumstance. It’s an obvious storyline in many films, plays and books. If you can’t be cured, at least be cheerful and grateful things aren’t worst!? This often self-imposed censorship no doubt influences the choice of who is deemed deserving to be published. Ignored are those truthful pen pushers who speak of rage, anger, and revolt. Let alone systemic and societal complexities, the unreliable authors easily edited out. I am guessing the paid gatekeepers are drawn towards those who inspire, and do so by adhering to society’s expectations. You can speak out, in acceptable way and by colluding with the unsaid, rules set out in elitist spaces. Which leaves activists hunting for alternative podiums, like those the internet now offers for free.

 

Groups and privilege 

Few representations speak of Disabled people as a sizeable group, a population in receipt of a discrimination of specific character – ableism. Writers on many subjects seem reluctant to seek the Disabled People’s Movement for reference -  an articulation of community ideas and political strength. While many pens refer to Women’s Rights, Gay Pride Or Black Lives Matter movements, even where definitions vary leadership is identified – even if ideas are not agreed on. But when it comes to disability many will admit to never having thought of looking. This is most noticeable in texts where the writer chooses to [re]invent a story about Disabled people rather than use a search engine or consult Wikipedia. After changes in legislation, for example, it’s frightening how many words substituted in guidance just, but they do little to address systemic discrimination by altering the meaning of the text. Yet, without trusting the words of self-representation or the ideas of group interests, how can words be written without the abuse of individual power and group privilege. 

 

Working mindsets and institutional terminology 

Within the forests of texts devoted to professional development, and across academic disciplines, disability is rarely mentioned with reference to Disability Studies. Occasionally the word ‘disability’ is added to a list, sometimes with reference to Equality & Diversity, but the application of theory to subsequent subject matter lacks rigour. I wouldn't say that gender studies or critical race theory helped spell out feminism and racism in ordinary conversation, but over time I think terminology crosses boundaries. To date Jo Wolff’s chapter about disability in Ethics and Public Policy: A Philosophical Inquiry, is one of few examples I can find that seems to articulate an acknowledgement to the Disabled people’s movement, providing an account that acknowledges the storytelling and tellers of the disability movement. In worst examples, I found that some writers while quoting disabled authors attributed different meaning to the words they referenced. In terms of legitimacy – null points!

 

National debates 

While it’s fair to say a growing number of texts now stand against the hardship imposed on the disabled population in the past decade by an austerity narrative. These are no doubt dismissed by many paid writers as individuals railing against the system. Well that is until you look at the numbers more closely. Some have highlighted a distinct change in framing.  Where ‘disadvantage’ is not articulated as inequality / injustice, but as othering those hardest to hear. A story of individual failure that plays into a wider tale about the feckless and the work-shy. A story that  Duncan Smith once told as one of a broken society within which individuals are responsible for poor choices. His perspective is his only truth, as his 2010 speech declares: ‘…driven by the stark reality of what I’ve encountered. As I travelled to many of Britain’s poorest communities I concluded that tackling poverty had to be about much more than handing out money. It was bigger than that. I could see we were dealing with a part of society that had become detached from the rest of us’ (Wiggan, 2012, p. 388).

 

 

Global injustice and unsustainably 

Finally, in a tale that does not make it to the front pages, evidence suggest the impact of unfettered growth on communities and ecosystems alike is huge. In the UK we’re very good at evading demands for equity on the justification of growth and its cost; this seems to further silence the matter of the legacy of colonialism and the exploitation of economic dominance. Where our demands for cheap and plentiful food leaves producing countries to deal with poverty and illnesses this causes. Not only is the experience of impairment dismissed in global debates, but privilege is justified on the grounds of increasing luxury that is neither needed where the want for it is an affliction of affluence. While UN envoys call for redress in terms of disabled people’s Human Rights, the papers clearly have Disabled people down as victims or sinners. Not a great choice, you’ll admit.

 

Looking back, the results of this analysis should not have been surprising. However, as I shared recently, I was taken aback by the stark absence of what I had expected to find as a ‘paper trail’.  Once identified the distortions helped me gather an impression of language in everyday conversation, this in turn helped me explain how and why the culture in certain places was more or less likely to harm the disabled individuals within them. 

 

 

THE ACADEMIC BIT:

While the number of texts analysed can be argued as modest, what surprised me was how quickly I acquired a sensitivity to each distortion. I use sensitivity, as I would to describe a well calibrated instrument, to imply that subjectivity can be developed where needed. The trick, I found, was to try and read under the words, determining meaning not word use or spelling. I fast began to notice that texts that did deal with disability were skewed, mostly illness and impairment were conflated, disability studies were ignored and individual stories were stylised. Having set out to find a distinctive voice and evidence of interaction with networks of disabled individuals, it proved far more difficult than I had anticipated.  There are very few texts published before the 1950s that tell of the personal and working experience of disabled people. Probably because less than three decades ago disabled people were all but invisible on the streets (Berghs, Atkin, Graham, Hatton, & Thomas, 2017). Disabled people had few personal stories in the public domain, and largely they lived in institutions or behind the closed doors of private homes (Humphries & Gordon, 1992). A recursive loop has seen a shift backwards in public consciousness over the last decade (Goodley, 2014), in a culture shift where disabled people are subject to daily attacks and amid far wider vilification (Quarmby, 2011), hate and harassment – [Getting Away with Murder report, 2008]. Even the most minor omissions and micro-aggressions are poisonous as they add up in a myriad ways to harm those exposed to them daily. These can include physical proximity, denial of gender, infantilisation, ridicule, disregard and banalisation. Easily dismissed by some as caring, teasing or friendly, this is clearly not how non-disabled people are treated according to those with an ableist sensitivity. As bloggers remark, the subtle messages communicated by these careless acts are negative and condescending (Lu, 2016). No doubt the product of bias, they are untypical in ordinary everyday exchanges, they are the very personal end of a more indistinct yet sizeable wedge driving hate crime (Quarmby, 2011). This wedge, when lodged deep in the spleen, is neither recognisable nor understood as a multi-layered juggernaut by those who cannot articulate it. 

 

#blogoff #HumanRights #legitimateAccountability #PhudBingo 

 

 

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