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 

 

 

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.

 

An understanding of power and language

Speaking as a writer not an author, and daunting as it is, here is a story. Years ago I stood outside a classroom, waiting for my turn to teach, listening to the woman ending her session. ‘Black Majority’ she said ‘is the way I articulate Black people’s power in the world. I use the words to counter the oppression – the racism - they face’. She went on to explain that it was not the number that marks a minority, but the silencing imposed on experience that minimises group voice. I remember her talking about the whiteness of her world, where few Black people were visible - on streets, in text, in storytelling. She said she needed to frame the strength of a group voice against her own privilege. That was decades ago, it was my first memorable lesson in anti-racism. It stuck. 

To inform my research I was guided by the storytelling of Black authors – a cultural immersion (Gladwell, 2008). Their stories helped address my own racism, but more importantly helped me write more accurately about the population I was focussing on. Foremost, I wanted to convey in my own storytelling that many of the people I was speaking about were in receipt of racism. I found myself resonating to a growing collection of stories, nodding in recognition of the pain - if not the words that caused it. I began to recognise, but not identify with, the racism carried by seemingly harmless words. I empathised with Reni Eddo-Lodge’s (2017) wish not to talk to white people. I understood Sara Ahmed’s (2017), feelings of being viewed as a problem. Importantly, I acknowledge that there are aspects of their experience I’ll never have to endure. As Pease’s (2013) story of the mirror illustrates, in the morning I never have to consider the problem most people will have with the colour of my skin. That’s my privilege. 

As l made my journey, I continued to look out for the characteristic way different stereotypes drive the character of each discrimination. It was a Black woman who taught me that she understood being Black as a choice [her emphasis in capitals]. She spoke to me of her choice to articulate her belonging to a group of people in receipt of racism. My privilege, she explained was not being white so much as not having to endure the racism she experienced every day - the prejudice, institutional discrimination and global inequality imposed on a Black world majority. As a Black Disabled woman, she said her parents had taught her to frame the disablism she faced as similar to racism. Working in a similar way to other isms, but different in its specific character, a triple whammy. 

It was in conversation with a Black trainer that I learned in what way the prejudice she faced was different from mine. My colleague’s name is Smith, yet she tells me how often people ask her to spell it. That’s racism, she says - their prejudice – people are unaware that they expect her name to have an exotic spelling. She is from Peckham she adds pointedly ...

In the words of Marianne Coleman; ‘there are more differences within groups than between them’. ‘Them’ might be useful in pointing to individuals in a park, it has direction and is specific. But trying to identify who is Black, Gay or Disabled it is not helpful. it is probably more true to say that there are people facing racism, homophobia, ageism, transphobia, religious intolerance and ableism ... WHEREVER we gather.

Because the myths about groups have different characters, I feel that we need a conversation about the cumulative negative impact of -isms more than ever. As those in receipt of double or triple prejudice are undoubtedly under greatest likelihood of exclusion in society and in its storytelling. ‘AND’ I find is more useful than EITHER / OR in these matters. We have a long way to go to address racism AND all other forms of oppression, AND we need not choose between them to work under a duty and with agency to dismantle the stories that threatened their lives.

An anti-racist language was easier to adopt than one with a more Intersectional fluency. I think this is because there is such a pull on us to see things in binary, sometimes the ‘them’ and ‘us’ is formed in our hearts before we’ve properly had a chance to un-think it. As a writer I found it hard to talk about ‘we’, avoiding ‘them’ and ‘us’. Statements of identity are personal, and multifaceted. It would be hard to be on the end of any spectrum.

These matters became spiny issues in my thesis. Because when dealing with a storytelling that silenced Disabled people’s stories (Coleman, Brunell, & Hauge, 2014). Not only was it hard to find ‘disability’ on the list of Equality and Diversity literature, but it was rare to find disability studies added to a wide range of critiques. It is telling that early disabled campaigners, fighting for human rights made links between the oppression they faced and the one that drove the apartheid that harmed Black South Africans (Finklestein, 1999). Unlike Ms Smith, I have an unusual maiden name: Mulhern. From an early age I remember my mother having to spell - M U L H E R N - every time we went anywhere requiring identification. In my head I heard the chant as I learnt to write … in two different languages. Yet, I can remember people adding Es, As and Ss! Was it because I could not be trusted to spell my own name correctly?! I also observe, that many of my friends will rarely have people invading their privacy, asking rude questions or telling them what to do and what to say as often as I do. I’m disabled, they are not, that’s their privilege, however those that are allies speak to the power of Disabled people.

 

Bibliography

Ahmed, S. (2017). Living a Feminist Life [Kindle Edition] . Duke University Press.

Coleman, J., Brunell, A., & Hauge, I. (2014). Multiple Forms of Prejudice: How Gender and Disability Stereotypes Influence Judgments of Disabled Women and Men. Science+Business Media, 34, 177–189.

Eddo-Lodge, R. (2017). Why I’m No Longer Talking to White People About Race [kindle edition]. London: Bloomsbury Publishing.

Ferguson, P., & Nusbaum, E. (2012). Disability Studies: What Is It and What Difference Does It Make? Research & Practice for Persons with Severe Disabilities, 27(2), pp. 70-80.

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

Gladwell, M. (2008). Blink - The Power of Thinking Without Thinking. London: Penguin Books.

Pease, B. (2013). Undoing Privilege, unearned advantage in a divided world. London, New York: Zed Books.

 

 

I got a bit giddy yesterday. Probably because I spend my time writing these days ... thesis oblige! So Attending a conference was a huge treat. The following is an attempt to organise my thoughts... if not my feelings. 

On Thursday 13th September 2018, it was the annual conference of Lloyds Banking Group Centre for Responsible Business at Fazeley Studios, in Birmingham. 

It was wonderful to meet a few of the authors of the texts I’ve been guided by over the past few years. It seems that liberated from their parenthesis, their voices had humour, warmth and sparkle. Talking to a few people before I left, ideas of hope and courage left me with feelings of excitement about the future.  As evidence seems to suggest, it is positive emotion that helps us engage with new ideas, complexities and nuances. I feel this is important, because as I have read, if you are happy to receive new information, you are far more likely to trust it’s source, the divergent voice, and consider its significance in a reflexive way. So being invited to join a movement urging us not to be pessimists or optimists but possiblemists made sense to me - on many levels. 

Trust emerged as a golden thread. Tying together notions of accountability, transparency, purpose, co-creation and collaboration. I was struck, during Ian Thomson’s opening speech, that given their number, the 17 Sustainable Development Goals could give us a headache.  I do wrestle daily with a tendency to see things in binary, when in conversations about sustainability the perspectives are multiple, complex and intertwined. As we also heard, the tendency with multiple lists is to cherry pick, to prioritise, and present things in a linear fashion. This, I think, introduces a hierarchy, which can reduce / increase the importance of some measures. Where some interests are marginalised I worry that in an effort to gain focus we can also lose the human detail - the angry voice in a painful story.  Dissonant, smaller, or less prominent issues get lost in a complexity we try to tidy. We can lose sight of significant interactions, the very real human tragedies, that fall between procedural cracks and beyond organisational measures.

In terms of leadership, and within the forests of literature that have been printed to support its development, authors highlight the need for an ability to engage with flatter hierarchies, multiple perspectives and alternative visions. To accept another’s voice in shared story - even where it disrupts common assumptions. This demands a degree of reflexivity, because complexity and nuance are important, and a willingness to engage beyond the boundaries of our own interests, our own experience or the mindset of our disciplines. As Hargreaves warns us, our ability to sustain leadership activity depends on a full menu, not the choice of a few dishes. To be able to think of issues of diversity, inequality and social justice, for example, we need to consider lots of stuff that may lie beyond our own experience. Yet, I have noticed that what is beyond our own experience is often the easiest to reject. Our trust is challenged by the testimony of those we find less likeable, or where personal tales seem to exaggerate personal issues in isolated cases. Doing my own research, I have read that despite being well documented, disabled people’s leadership activity has not been accepted as evidence of its existence and the voice of disabled professionals and activists is often dismissed.  I don’t claim that individuals set out to silence disabled people in a shared narratives, but the fact there hasn’t been a word akin to sexism and feminism to denote similar abuse of power toward the disabled population speaks volumes!!  The irony amuses me, that when I tell people that the voice of disabled people is not trusted, I’m sometimes told that what I am saying is not true!

Still not quite final part deux

This blog follows part one: Nearly but not quite the end

Once the story was told, the ethnographic chapter, I was able to sit and reflect on what I had found striking about my visits and the story they helped narrate. This was the theoretical part of the work, using the analysis tool, the crip-sensitivity described earlier. It’s my ability to read into culture that helped me identify what made an organisation accountable - or a culture emancipatory. Moving from field to chair was more challenging than I’d anticipated. However, from the chair it became apparent that while the social model, as a theory, has been so successful at beginning a conversation about rights, it is overly simplistic when applied to the legitimacy an organisation can seek to respond to the growing insistence of activist to have a dialogue on rights. It is not wrong, it’s knowers need acknowledgement, but it can lack finesse and depth. Particularly, when applied to the articulation of accountability of organisations where workers are entering the private worlds of disabled people. Mainly because to be accountable, see previous post, workers straddle a market/citizen divide, in that they are visitors in people homes, treading as guests, therefore need to managed their power [thank you @NHS_RobW]. How do we then transfer what describes a respectful relationships into professionalism within strategic conversations. Conversations that talk about groups, their power and interest, rather than viewing disabled people as consumers in market where their citizenship is eroded. Talking about groups within an unequal society is an additional conversation, not an alternative one, the personal exchange still needs to be respectful. So sat in the chair, fingers poised on the keyboard, I began a reflexive process. I started in my mind with the words: what struck me.


I noticed, for example, that the welcome was far more attentive than those I am used to. It didn’t fade, it was a proactive, engaged and very intentional - sign that every worker takes radical hospitality seriously. ‘Bathing the room with sunshine’ was a phrase used to denote the worker’s intention to see the best in situations and the good in people. I sat alongside workers deliberate in both thought, and measured in their practice, with the energy they employed to anticipate the positive and celebrate the possible.

I also was struck by the number of times workers voiced their thinking and ideas. It was as though they had to ‘say it’ in order to remain vigilant against a culture that was toxic but also too compelling to ignore.  A deviant culture here, I noted, was not one of positive spin. Critically, positive stories were all about telling of the energy in the void, and highlighting an unacknowledged capacity. This was done with an enthusiasm for individuality I have seldom seen elsewhere. Unlike those who grasp at what they see as the upside of a negative, all too often often insulting in its bias and simplistic to the point of insult. What I saw was a real wish to appreciate the pleasure people enjoyed in their lives. This so obvious pleasure in sharing time and space was sustained in every exchange, without fuss or effort but with both humour and seriousness.

I noticed that the only thing that remained a constant was change! A state of flux was the norm, and trying to pin down what naturally moves was expressed as counter-culture.  All the conversations I took part in were underlined by an anticipation of continual shift, with this a realignment of existing patterns. This, I felt, ensured that what mattered to each person was kept alive, an acknowledged priority, because it was at the centre of current business. I loved the phrase ‘turn over the one-page-profile’, because all too often disabled people’s lives are limited by the paperwork that sets their position in stone. Thus crystallised any further progress is limited if not impossible. This is a real issue within the context of the Global Development Goals. How can we say to be emancipatory if we know that many are being held back by being held down.

In disability services, as in human services more widely.  Where support is turned into a paid commodity, money goes into the organisation and is then divided into silos before decisions are made about what it funds. Options are then made from piecemeal bits, never again to been seen as a myriad of choices to meet the variety of needs, wants and preferences of a population. Here money goes to the middle, to the disabled people the organisation serves, ensuring the power is always in the hands of those holding the purse.  As so many debates have shown, allowing people few options already constrained by crumbs within separate services, is not the same as asking people what to provide. Even where sometimes support to choose is required, the crux is having control. Please also note, these are very basic needs. The time people get up, shower, eat, take a walk, shop, or have a ciggy. Robbing people of dignity under the misdirection that none of us are totally free is grossly misreading the impact of abusive systems.

In short, I slowly worked towards a view of emancipatory practice as closely aligned to the human rights articulation if social justice. To counter injustice, emancipation needed to underpinned by a dismantling of institutionalisation. Therefore, best defined by independent living, anticipating a future with freedom, control, choice, and dignity, in the home, at work and in the community. This idea, I believe, sits right at the heart of accounting for society and the environment debates. Because, it positions a globe-local interest clearly, with the problems of the unsustainable nature of support provision.  Like so many other services dealing with human being within a market that eclipses the inequitable pressures above each individual, in the wider consumerist society within a neoliberal ideology. What I felt was emancipatory, was not about the disabled individual [empowerment was always only served by best practice], but about every action joining up to resist ableism more widely within the organisation. Even beyond its boundaries its impact can be felt, as if a bubble the culture acts as a shield of sorts, but also a beacon of hope acting as a possibility of what can be done. A decade ago the narrative didn’t allow such option, it was impossible by being unimaginable. It can be seen as in the same way as sexism rose above the issue of misogyny, sexism was the addition of the dimensions of institutional discrimination and systemic inequality that characterises women’s oppression - globally and in locality. This isn’t to say that hate crime against disabled people shouldn’t be tackled, but that without a fuller understanding of the ableism that feeds it it will be perceived as a personal dislike not a human rights crisis. I would argue the later needs to be part of the accounting profession’s cris de cœur, a passionate stand for equality in a climate that does little to address it.

To be continued

And to end…

Impairment and disability: a world of difference

The d/Deaf and Disabled People's movement in the UK has used the term disabled for many years. Many use it to make clear that it is the disablism and ableism disabled people face that qualifies them as disabled. As a group, a population world wide, we are disadvantaged by a characteristic oppression - ableism - and therefore its is our communities that have a problem. Not us. The disadvantage imposed on the disabled population comes through environment and culture. while personal difficulty shouldn't be minimised, its more complicated than personal difference or isolated issues. Yet, because impairment and disability are often used interchangeably, disability is mostly understood as synonymous to the personal characteristic, cognitive functioning or physical deficit of the individual.  The following applies disability theory to language. Often referred to in Disability Studies as the Medical Model and Social Model, I use it to framing language as practice - a personal super-power in public spaces.

 

The Social Model as self-referenced language 

As a shorthand, in disability equality, the Social Model refers to the shared understanding, and activism, of politically committed disabled individuals, and their allies,  in working to redress the impact of ableism in policy and practice.  Please appreciate not all disabled people agree, like those within the feminist movement there are radicals, moderates and non-subscribers! However, particularly for those working in the public spheres (writers, campaigners, educators, activists), they use of specific ideas to convey the empowerment of the disabled population. 

As part of my Ph.D research, I read over 900 journal abstracts on “disability”. I then used a blend of personal experience, research evidence and professional wisdom, in my analysis. I found that I could feel - to a growing extent - whether the articles I read honoured the voice of disabled people by aligning to the interests of the Disabled people's movement. Even where I felt authors struggled with words, reading under them, I saw meaning that was the voice of an ‘ally’. In this blog I use older ideas related my work on dialogue to help share a few ideas about the language used to discuss matters of disability. 

Although, five different types of dialogue have been identified, I've grouped them here into two categories for ease: public and private.  When I talk about disability I first consider whether my conversation is for general broadcast or personal interest. I can then more easily differentiate between what I feel the world needs to hear - disablism; or whether it is a private conversation in which I need to respect the privacy of lived experience and/or personal predicament. So for example, I'll talk about disabling barriers in training, however privately I'll talk with a known person or group about the experience of living with depression. These aren't hard and fast rules, or definitive categories. Equally, the boundaries are not clearly defined, but on the whole it's a rule of thumb that's as good as any.

For many the term ‘disabled’ has become positive and empowering, as it denotes the recognition of oppression and affiliation to a civil rights movement. Used as a verb - I am disabled by attitudes; he is disabled by systems, he faces disabling structures - it recognises disability as a social oppression - something external to the person. Significantly, it also acknowledges something that can be changed to further inclusion – through the inclusive practice of acknowledging and removing barriers.

Some people hold the view that ‘Disability’ is not a description of a personal characteristic. A disabled person is not a ‘person with a disability’ as the person does not own the disability in the way that you might be ‘a person with brown hair’. Consequently, some people understand that the opposite of ‘disabled’ is not ‘able-bodied’ or ‘abled’, but ‘non-disabled’ or ‘privileged'.  So for these people the use the word ‘disability’ describes the social reaction to difference. Disability is not banned or bad, but ‘impairment’ is used more mindfully to talk about medical conditions,  diagnosis or description of functioning where it is required – probably privately or with anonymity.  

Extending terminology about disability will help us all to talk with more certainty about:

- the disabled person - their skills, experience, qualifications and particular knowledge

-  disablism -  the barriers, negative attitudes and working practices faced by disabled people but not by their non-disabled colleagues within organisations, sectors or professions (eg fear, lack of awareness, avoidance, micro-aggression, stairs, complex or incomplete policies)

-     ableism – the misrepresentation or silencing in text; the documents, communications, accounts and wider storytelling of the organisation.

 -  impairment, condition, difference or functioning – private information, the disclosure of which is a disabled individual’s choice to disclose: the same is true for their identity as a disabled person

-   inclusive practice - an ongoing process of adjusting equitably to diversity.

 

It is all very good news, as addressing the prejudice, discrimination and inequality disabled workers face makes our world.

Understanding the critical difference between different terms allows the speaker/writer a choice to talk separately and clearly about:

·      a named individual => the person => bob

·      impairment => functioning => difference

·      disablism => institutional discrimination => structural barriers   

.      ableism =>  society’s inequality and injustice  => oppression

Some love the simplicity of these examples: 

Examples of Impairment	Quadriplegia Polio Cerebral palsy Blindness Depression Deafness
Examples of disablism	Buildings without ramps Poor health provision Bullying, name-calling Segregated education Workplaces without lifts

Disablism can be likened to racism, sexism, homophobia…. In the most simplistic way, one could say that the disabling effects of our culture is imposed on  disabled people. Their cumulative weight may be in addition to the pain, effort or predicament that may be caused by a disabled individual's difference. However, in the public sphere, everyone can do something about tackling disablism, whether we have an impairment or not. Allies, to my mind, denotes those who acknowledge the ideas of the Deaf and Disabled people's movement, D/deaf and Disabled People’s Organisations, and those keen to acknowledge the voice of disabled people who as a group have be silenced throughout the years. I often return to my introduction to an earlier definition: "Disability... the disadvantage or restriction of activity caused by contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from the mainstream of social activities". (Union of the Physically Impaired Against Segregation, 1976). Not because it's perfect, but because it began a conversation that changed meaning not just words.

 Using disability to mean impairment denies the complexity of both individual experiences AND  cultural injustice. The negative of unhelpful ideas relating to care and cure can do damage, when words often used in the media describe the lives of disabled people as worthless or incomplete. The way I read it there is so much confusion around terminology that sometimes we are too scared to talk about issues that affect us all.  Power is still in the hands of professionals, with  many non-disabled - doctors, educationalists and social workers - still insist on using politically correct - rather than appropriate - terminology. Research suggests political correctness  confuses issues, advocating terms such as physically challenged, visually challenged etc.  Such expressions detract from the real issue: who is being challenged here? Disabled people certainly do feel challenged by other people’s lack of tolerance and by the barriers that make it harder for them to participate. 

The nub of the issue does not concern ‘good’ or ‘bad’ words. Respectful language need not be either negative nor positive, in my opinion, it does needs to articulate an understanding of the oppression disabled people face - ableism - with enough clarity to make courageous conversations possible.

Do read more: Disability equality training