A town called allies ...

Thank you Bennie Kara (@benniekara author of A Little Guide for Teachers: Diversity in Schools) for the wind beneath the sails of this blog. Bennie made me think about allies recently, and her provocation inspired the next few blogs. Thank you sister! 

In a series of blogs, I wanted to explore different relationships, different aspects of being an ally. But I rarely talk/write of private stuff, so a break from convention here, as I wish to introduce you to a wonderful woman. As I wrote in my acknowledgements it takes a whole town to keep a PhD student alive...In times of need allies are the people who’ve been there for me. Sometimes friends, sometimes colleagues, sometimes strangers… together providing a source of strength... For me there’s a fundamentally life affirming quality to these relationships, one that can be expressed in different ways. Here I look in the places close to home... 

 

My sister: thoughtful, incisive, reflective, wise, warm and funny! A bit barmy and whole lot loving. I am always astounded at how our relationship survived against the hate we’ve faced. I’m the oldest, yet rarely the more mature, I turn to her for insight, calm and strength. We shared the path for many years, so on the face of it, we have enjoyed the same privileges. However, it is never that straightforward, and we talk about our place in the world with trepidation - fear almost.  We both have impairments, and while you can see mine you can’t see hers. By her own admission, therefore, she can choose to disclose.  She has watched people reject me on sight. In our own ways we’ve dealt with similar issues, but equally there have been stark differences. I wear the ‘disabled’ badge with pride these days. I’ve spent a large amount of my working life dealing with disability. Despite the complexities, I’ve gained a degree of ease and fluency, when talking about disablism. As I’ve described previously I’m an activist. My sister doesn’t wear the badge, she understands little of the politics, and her expertise lies in a different domain entirely. I still would include her in the population I strive to fight for, because I challenge ableism irrespective on who it lands. My sister argues that because people don’t know, the stigma is not obvious, her difference is not made public issue the way mine has.. We trust each other’s experience, thinking and commitment to social justice. Our conversations will no doubt rumble on... in many ways the conversations we have mirror those many others are having. 

 

When I was very young I overheard a number of people talk to my mum about me, what a shame it was for my sister. I would freeze, confused, and ashamed, for what I wasn’t sure. I hurt. I carried the pain for years. In our 30’s, I sucked up the courage, and actually asked her how difficult my presence was. She squealed with laughter initially, thinking I was joking, then realising the seriousness, and then said; "many people have fucked with our heads and inflicted pain in our lives... YOU’RE NOT ONE OF THEM."  When I think of our relationship I know I’m ok. She’s my greatest ally. She knows the cost I pay to keep up, but will also tell me to get lost if I’m asking for help I don’t need

 

I know plenty of siblings who don’t work on these levels. We have had to. We now sit at a distance. The elephant in the room is far too big. That doesn’t mean she’s not an ally. The understanding of what each face runs deep. We have each other’s back, we delight in our successes, even when we don’t understand them. She has a greater grip on what I face, odd possibly, but I’ve had to move past the pain. She’s an ally, not because she’s an activist, but because she understands some experiences from her position at close quarters. She has watched, acknowledged, listened and understood ableism, although she wouldn't name it such. She’s held a truth about my story that others will never see. The dark moments, the fear, the pain, the recovery (of sorts)... and the heaps of great stuff too. 

 

Now I’m not suggesting that we all treat each other as siblings, because there are other boundaries to consider here too. The private/intimate invasions of disabled people’s lives is now better documented. But for me the lesson here is trust and respect for another’s stories, even, and maybe especially, when they are hard to believe. Particularly when we don’t recognise it as familiar. I apply this idea, by treating colleagues in a familial way, not a familiar one (Helgesen, 2005).  That is, I aim to look at them as equals, rather than within a positioning on a hierarchical tree. It goes further, the gift my sister extends to securing my safety in the world is far from unique. On my travels I have encountered this acceptance by many, the allies I’ve made, have also been siblings. As I know my sister has gone on to secure belonging for many. I can’t even express the joy of being understood - not having to justify, explain, or compensate! Thank you for having my back, as I have yours. I’m going to struggle with the publish button with this one, but praise be to siblings, and those who treat you as kin!! Up the sibshood in every way, and here’s to diverse families! 

 

Next blog, close friends, spite ‘n malice and ‘helllooo’ - ally the sequel.

Don't take my word for it, Jenny has her own perspective.

https://languageofrespect.blogspot.com/2022/01/hello.html  

Exception not exceptional!

Many moons ago, when I was younger and more resilient, I cringed when facing ableism. Once, while working for a large employer, facilitating a day on Disability Equality, when the recruitment lead said to me: “anyway, this is a waste of time, we don’t employ disabled people because we need our staff to be exceptional".  I asked them why they assumed that disabled workers were not exceptional, they got angry, and shouted back that it was obvious. Despite a clenching in my rear-end, I persevered, and pointed out that this might be a an assumption based on prejudice. The unconscious bias was assuming disabled applicants were ‘a bit rubbish’, a notion I’d qualify it now as ableist these days. I asked gently, that maybe they were voicing an idea they hadn’t fully thought through. ‘And now!’, they replied, ‘you’re just being stupid!’. Ableism twice!!  I bit down on my shame! Here was me thinking I would be valued as an equal- a professional – but treated as a child. I can’t even start to unpick the levels of wrong, or the embarrassment I felt. Fear rose, as let go of feeling competent, qualified and confident.

To this day, when I see ‘exceptional’ in a job advert I shiver. Is it even worth applying? Or will the days I spent on the application end up in someone’s trash file. It’s a difficult one, and hard not to give up altogether. Especially as I know it’s a world where disabled people face great disadvantage, so my efforts need to be greater. The messages we are given are certainly contradictory. I am often asked why I chose not to work for example!? Rarely, is it acknowledged that I keep trying despite the hundreds of applications that have been rejected. And while those around me struggle to find jobs, their unguarded remarks suggest I don’t need one... it’s implied that for disabled people employment is a luxury.  I am told I’m lucky to have made a choice; that somehow being paid the equivalent of 7 months minimum pay over the last decade is a acceptable ‘lifestyle option’. Ten years in which I’ve spent most days filling in job applications or aiming to prove I’m good enough through qualification and experience.

There’s irony that I undertook my PhD on advice it would put me in a better position to get a job. Sadly, the findings seem to suggest I’d have more luck bumping into a three legged unicorn next time I leave the house.

It’s not that I haven’t had really positive experiences gifting my time and energy for free. Partly job experience, partly job satisfaction, and lots of meaningful interaction. But I’m always taken aback when people I’ve trusted then openly tell me they’ve given paid work to those they feel could afford it. Or, as it happened once, forgetting the days of hard work I was happy to offer by questioning we’d worked together. Work a friend payed for. ‘Oh, we thought you needed to keep busy?!’  Few acknowledge that my husband pays for the hours I gift. As I stop applying, and rely on his good nature to keep the roof over our heads. Furthermore, he often picks up the pieces when in tears I realise my contribution was never seen as having any worth.

So this year I’m going to say ‘no’.  Not to those who joyfully accept my presence as adding to their conversation. But ‘no’ to those who don’t even admit to their belief that I’m rubbish, stupid, broken, incompetent and worthless... even when they don’t think it.

 

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.

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 

 

 

Bibliography

Berghs, M., Atkin, K., Graham, H., Hatton, C., & Thomas, C. (2017, 6 24). Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people. Disability & Society, pp. 945-965.

Broach, S. (2018, 2 12). Rights in Reality. Retrieved 10 18, 2018, from Mendip House Not Safeguardin: https://rightsinreality.wordpress.com/2018/02/11/mendip-house-not-safeguarding-failures-but-rights-violations/https://rightsinreality.wordpress.com/2018/02/11/mendip-house-not-safeguarding-failures-but-rights-violations/

Brown, & Leigh. (2018). Ableism in academia: where are the disabled and ill academics? Disability & Society, 33(6), 985-989.

Equality and Human Rights Commission. (2018). How is the UK performing on disability rights? The UN’s recommendations for the UK. Equality and Human Rights Commission. EHRC.

Equality and Human Rights Commission. (April 2017). Being disabled in Britain - A journey less equal. Equality and Human Rights Commission. London: Equality and Human Rights Commission.

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

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

Humphries, S., & Gordon, P. (1992). Out of Sight; The experience of disability 1900-1950. Plymouth: Channel Four.

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

Lu, W. (2016, 10). 13 Microaggressions People With Disabilities Face On A Daily Basis. Retrieved 10 22, 2017, from Bustle: https://www.bustle.com/articles/186060-13-microaggressions-people-with-disabilities-face-on-a-daily-basis

Lukes, S. (2005). Power: A Radical View. Palgrave McMillan.

Manji, K. (2018). ‘It was clear from the start that [SDS] was about a cost cutting agenda.’ Exploring disabled people’s early experiences of the introduction of Self- Directed Support in Scotland. Disability & Society, 1-21.

Morris, J. (2001). Impairment and Disability: Constructing an Ethics of Care That Promotes Human Rights. Hypathia, 16(4), 1-16.

Mouffe, C. (2014). Democracy, human rights and cosmopolitanism: an agonistic approach. In C. Douzinas & C. Gearty (Eds.), The Meanings of Rights: The Philosophy and Social Theory of Human Rights (pp. 181-192). Cambridge: Cambridge University Press.

O'Hara, M. (2017, aug 15). Liz Sayce: ‘The UK thinks it is a leader in disability rights. But it has a long way to go’. Retrieved 10 30, 2017, from The Gardian: https://www.theguardian.com/society/2017/aug/15/disability-rights-uk-not-doing-enough?CMP=Share_iOSApp_Other

Priestly, M. (2003). Disability, A Life Course Approach. Cambridge: Polity Press.

Quarmby, K. (2011). Scapegoat [Kindle Edition]. London: Portobello Books Ltd.

Shakespeare, T. (2006). Disability Rights and Wrongs. Abingdon: Routledge.

Thompson, N. (2007). Power and Empowerment. Lyme Regis: Russell House Publishing.

Titchkosky, T. (2011). The Question of Access: Disability, Space, Meaning. Toronto: Toronto University Press.

Wolff, J. (2011). Ethics and public policy: a philosophical inquiry. Oxon: Routledge.

 

Disclosure, individual choice and privacy

 I do feel that Issues of disclosure are made easier when guided by more nuanced definitions of disability. I was in a conversation about the matter of disclosure at a conference a while back, and we certainly got our wires crossed. The person I was talking to was using ‘disability’ to mean impairment. She believed that disabled people needed to be more open so that organisations could respond to their needs. I on the other hand was using ‘Disabled people’ to refer more specifically to the discrimination and oppression some face within our working cultures. Needless to say, it was a rather confusing conversation. 

 

My own choice of words is guided by three things: my personal experience, disability studies as an academic discipline, and disability equality as a working knowledge drawing of the voices of the Disabled people’s movement.  While I am aware I cannot speak for other people, I do believe I can build a professional knowledge base to reflect the interests of the Disabled population. I aim to speak on matters of shared interest through the frame of the named oppression imposed on Disabled people as a marginalised group – ableism. This does not mean I expect other Disabled people to agree, because issues of identity, community, network and group affiliation are matters of personal, individuals, and private choice.

 

Both personally and professionally I do like having separate words to talk about impairment, discrimination and ableism. The latter speaks of the specific characteristics of the disadvantage the whole disabled population face. In a public space, and more specifically as a Disability Equality Practitioner, talking about prejudice, discrimination and inequality are hugely important in terms of a political voice. 

 

As a disability equality practitioner, I advise organisations to deal with issues of monitoring & accessibility and accommodation in very different ways in order to respect individual choice while acknowledging group affiliation. 

 

Personally, I’ve had very mixed reactions to disclosure. It’s not that people are not initially sympathetic to the sharing of a hidden aspect of impairment, but sharing is a huge leap in trust, therefore I’m often hurt when people I have trusted then dismiss the added effort I make and the barriers I overcome within seconds. I have noticed that while many overestimate my capacity to keep up, a few will completely fail to understand the extra effort needed to achieve any degree of success. 

 

As for a public conversation about disability, while I see the importance of ticking a box to indicate the ableism I face, in the years of my research I have become less convinced that my five impairments need to be a matter of public concern. As an educated guess, I would argue that it is fairly easy to work out how many Disabled people can be found within any group [2 in 10]; and a breakdown in impairment category is also easy to work out if you take time to look. Therefore professionals do not need to identify who has what, in order to work on access, language and culture. 

Evidence exists regarding the number of disabled people in any population, therefore if less than 10 % of any group are disclosing that they identify as Disabled then the organisation has more than 2 problems.  Firstly, if there are no/few Disabled people in the organisation there’s probably a cultural issue linked to institutional discrimination [access, recruitment, retention etc]. Secondly, if workers or customers don’t feel able to speak up about the accommodations they are entitled to the organisation probably has an issue of trust. 

 

Furthermore, the way disability is treated as a rare and individual problem more generally in conversation contributes to the problem. Indeed, while it seems impairments are viewed as a matter of public interest, the invasion of privacy associated with this assumption fuels some of the prejudice imposed on disabled individuals. Don’t get me wrong context matters, if a colleague is kind enough to ask how my impairments affect me in a conversation about reasonable adjustments, I really appreciate it. However, I tire of being stopped in the street by strangers and asked ‘what’s wrong with you?’. 

I’m sure people don’t mean to be unkind, but they’re no doubt acting on the stereotype - if unintentionally - that Disabled people are turnips to be treated as infants. Way deep in their assumptions, not in their thinking, is a belief, is the idea that they know best what Disabled people need. This hidden aspect of infantilisation, not only allows a prying into private worlds, but a  right to ignore discrimination they refuse to consider. Both assumptions lead to ways of working that often deny reasonable adjustments in ways that compromise ethical values.

 

The point, for me, isn’t that ‘impairment’ is a bad word in a way that ‘Disabled’ is not. The real issue with disclosure is that it relies on the disabled person to trust the organisation’s understanding with regard to prejudice, barriers and discrimination. The onus is therefore on disabled people to advocate for fairness, more often than not by having to reveal far more private information than is expected of others.  There is a far greater public/private articulation to be stated for issues of identity to be respected. Only 3 organisations I’ve worked with so far [in 30yrs] make the distinction between impairment and ableism on their websites and in their documentation. This lack of articulation is a klaxon to me, as it often indicates how fairly I’m going to be treated further down the line.

 

Nearly 2 decades after the Disability Discrimination Act came into force, legislation still hasn't addressed its legitimacy. By their own admission, the professionals I have delivered disability equality to have said they had no way of guessing the implications of their lack of understanding regarding these matters. Many admit to being surprised to learn that it was up to them to ask about reasonable adjustments, while it wasn’t up to them to reinvent inclusive practice on behalf of the disabled population. The legitimacy of their storytelling rested on the leadership of Disabled activists - the ideas of the Disabled people’s movement - a civil rights group with definable interests.

 

In a dawning age of anti-ism, where acting to address discrimination is as important as acknowledging its existence, the words we use need more than ever to express privilege and disadvantage in order to have legitimacy. Where paid folk could decide how many shared their experience, many will now do their homework to use words intentionally chosen to reflect the political voice of marginalised groups.

 

Storytelling and the Social Model

It seems fitting on World Book Day to celebrate the writing of someone who changed my perspective radically. I was saddened to read of Michael Oliver’s death, he was a pioneer, an academic and an activist. As he states in his introduction to The Politics Of Disablement: “on the experience of disability, history is largely silent, and when discussed at all, it is within the context of the history of medical advances. Just as women and black people have discovered that they must write their own histories, so too with disabled people” (Oliver, 1990).  The Politics Of Disablement is a book that helped me move from ‘me’ to ‘we’ on matters of disability rights, and my copy has been well thumbed. I am not alone in experiencing the social model of disability as an epiphany, a shift in attitude, a rewriting of my personal story. 

 

 

I was in my late 20s when I was introduced to the Models of Disability... 20 years too late I think. Their power and simplicity were life changing, they altered so many truths, by offering a narrative to replace the one I had accepted till then without challenge. The tale I had believed was that disabled people were a problem. The Social Model re-told this tale by highlighting the negative ideas imposed on disabled people. Importantly for me the social model of disability was an acknowledgement that the voice of disabled people – including a political one - had been silenced, and significant action was needed to make space for more disabled storytellers in all areas of life. Oliver’s book helped me understand the past, the U.K. culture and context, that had led to the marginalisation of so many disabled people, denying them voice and visibility in our communities.

 

Akin to feminism, I found his articulation of disablement was empowering, it was about me, with the characteristics of the medical model that qualified dis/ableism as a named oppression imposed across the population. I cannot imagine going back to not having such a definition - by which I mean a shape that is tangible. As a theoretical perspective his words were not simply a story, but signified a different storytelling - stories told by us, disabled people. For me, the Social Model is symbolic. First, it cites the problem above the individual, in the organisational, institutional and societal conversation we have. Secondly, it interrupts the beliefs in disabled people as passive receivers, in favour of them as articulate participants. It unsettles the old tropes that perpetuate stereotypes, those that talk of disabled people as feckless, work-shy, dirty, costly, evil and faulty, in need of non-disabled people’s help in the shape of care or cure. Taken together these are powerful messages that have often fuelled segregation, discrimination and hate crime. The Social Model is possibly easier to understand than it is to apply to practice, policy and legislation. Its power was life changing for someone who until then had felt they had to change to fit in. 

 

It was years later that I read Michael Oliver’s book. Long before I had started my postgraduate work, at a time I had no understanding of references or theories. But the ideas had resonance, and became central to the Disability Equality Training sessions I facilitated. The Social Model is still a touchstone to which I return regularly, it gives me perspective and an articulation of empowerment in complex matters.  At a simplistic level medical model theory refers to asking the question ‘What is wrong with you?’; and the social model theory as asking the question “What is wrong with society?’.    A Model is only a representation of reality, one that can benefit from refinements and extension. BUT, its power is in its simplicity.  As a storyteller Oliver provided a vision, an alternative that restored dignity, strength and shared power to disabled people within their communities. Without his words I don’t think I could have penned mine. I was not raised within a family where politics was talked about, I had no language to describe a group voice, a political strength or the power of a movement. Oliver’s work gave me a sense of place in something bigger, something defined and something meaningful.  I felt protected, supported, and safer by being one of many,  a small voice in a much bigger story of social change. 

 

I’ve enjoyed critiques of his work, people who’ve made the effort to celebrate his voice, play with his ideas and understand the changing context in which it sits. I’ve also noticed those who’ve simply criticised, denying its importance and often hugely positive impact. It’s easy to poke holes with hindsight. Storytelling has changed massively over 30 years, but the alternative narrative of the Social Model rocked my world - changed my truth. I imagine it contributed to a fluctuating sense of empowerment for those of us trying to make sense of our personal experience within a public telling that is so often dismissive of the voice of the disabled people’s movement.

 

 

Thank you for your words Dr Oliver.

 

Oliver, M. (1990). The politics of disablement, London: The Macmillan Press.

 

 

 

Trust and movement at the Scottish Government Networks Conference

It’s a huge honour to open a conference, but one that comes with a degree of fear. As the first speaker you have nobody to follow. Following others speaks to the heart of trust. Trust is my touchstone today.  In the absence of another’s footsteps I’ll need to trust my own direction for the next short while.

I’m a paid pest! Well a pest anyway! I have spent a number of decades now delivering disability equality, and working on research relating to disability, accountability, Human Rights and emancipation.  [Everyone needs a hobby!]. As a pest I shake things up, this means I disrupt conversations - sometimes just by being in the room. More than that I’m an activist, I specifically question those conversations that present disability as a deficit, a problem attached to an individual, and an illness to be cured. When I became an activist I chose to step away from viewing disability solely as the personal experience of impairment. I needed more, so reached for what I now understand as research evidence and movement politics. Together these elements of evidence based knowledge came together to complete a view of disability that many call ableism - a social oppression.

It was not a choice that was straightforward, it took years, and the trip was fraught, the journey torturous. Along the way I came across the Four Thought podcast of Alan Bissett, talking about his awakening to feminism as the contradiction he sought to his growing addiction to porn. In the programme he talks about the difference between identity and politics, and he explains how he now sees feminists as an united group with shared and diverse interest. For him feminisms were important to his understanding sexism. In much the same way as the Social Model of disability, for me, represents an extensive list of interests disabled people may share.

Bissett's view of feminism was more than one that linked identity to women's personal experience, it was about a shared history and many ideas. Most importantly, he had to put his trust in women's voices to help him change his thinking radically. He saw this as a choice - a right to stand in opposition to the oppression that is sexism.

The trust we place in others is critical to our networks, if we are to move from ‘me’ to ‘we’.  Having an impairment is only a small part of our own tale, a critical part undoubtedly, but the pursuit of shared interests makes us more powerful in a joint storytelling. As in other civil rights movements, there have been many activists, thinkers, movers and shakers in a disabled people’s voice. What I think defines us as an anti-ableists is shared struggle for Human Rights set against vast structural and societal inequalities.

Personal experience is part of the understanding that drives my work, but so does a shared knowledge of disability equality and much research evidence that informs a whole manner of things relating to the interests of the disabled population. Explaining how these ideas intersect is beyond my ability here - I trust you’re getting a picture! For me, the idea of being part of a network is about belonging to a much bigger crowd. There are many ways to be disruptive: trailblazers, radicals, politicos, unionists, activists, educators,  policy-makers, all sorts... librarians!  The power and strength I’ve gained from moving with the crowd is huge. I feel stronger and less vulnerable knowing I am one of many. It is also energising knowing I am part of a storytelling that has a history, many voices and hundreds of ideas. Some I may disagree with, but all are anchors on turbulent seas.

The trust I gain from being part of a network, a movement, has offered a home, a language and a sense of belonging. Our shared stories are a growing library, an evolving tale of endurance in a disruption that weakens injustice!

Thank you to everyone that made this a fantastic event.