D/deaf and Disabled People’s Organisations?

I was contacted by a colleague this morning with a question concerning the use of D/deaf in D/deaf and Disabled People’s Organisations. As you’d imagine the matter is far from straightforward, therefore a simple one-line answer could not do it justice. 

 

This piece

•       is a provocation on the understanding of privilege and puts forward an articulation of disablism

•       frames audism, lookism and the pathologisation of speech impediments as form of ableism 

•       suggests that matters of self-reference to do with association and community are matters of personal choice 

 

I would first like to thank Dr Heather Mole*, as I draw on her work – and our many conversations. She has been an outstanding ally, and any lack of clarity is mine, not hers! As I interpret it, the Deaf community differ from other groups, because their culture is defined by languages, with distinct meaning, therefore the rejection they face is more to do with non-verbal speech than any impairment. As Heather writes: ‘small ‘d’ deaf [is used] to denote audiologically deaf people versus capital ‘D’ Deaf to denote culturally ‘Deaf’ signers. Small ‘d’ deaf people are described solely by their condition of hearing impairment whereas culturally ‘Deaf’ people are considered to be a subgroup of deaf people. Capital ‘D’ Deaf people are those who use sign language and are members of the signed language-using community and also understand ‘Deaf’ culture’ (Heather Mole, 2018, p. 29).

I articulate privilege, relative to non-disabled people, as not having to face disablism. This means I think that an individual doesn’t need identify as a disabled person for me to articulate the characteristic discrimination they are subject to – or the inequality imposed on the disabled population more widely. The way I read it, akin to the sexism women often experience, which is often unarticulated by them, but impacts on them negatively, as a characteristic array of disadvantages. In gender terms, there's a difference between ‘misogyny’ and ‘patriarchy’ in the language of feminism, that writers on matters of disability equality have yet to imagine. Currently there is a dearth disability specific terminology to describe identity, environment, discrimination and inequality.  

 

Disabled people, have an array of choices in terms of identity, groups, networks, associations and community; and therefore huge choice of labels and badges to describe affiliation or belonging.

• We can identify as disabled or Disabled – or not
• We can choose our relationships to groups, networks and / or communities 
• We can disclose impairment, conditions or difference – or not
• We can align to cause: shared problems, concerns or politics – or none

For those of us who identify as Disabled people, the capital ‘D’ typically indicates a choice of activism, community and/or culture. I tend to use ‘d’ or ‘D’ strategically, very much depending on context. If I am asked specifically, I will state my identity as a Disabled, to acknowledge the community, culture and political voice of the Disabled people’s movement. As an author, it is more difficult, I define my criticality as a sensitivity to feminist and disablist language/culture. However, as a writer, I’m not always an author because I tell the story of others [feminism]. Therefore, I hold myself accountable to both the disabled and women’s population by acknowledging Women and Disabled people as activists within the civil rights movement movement more widely. I disrupt storytelling by holding to a penship that is anti-sexist and anti-ableist in its activism. 

 

From the perspective of privilege, ableism often refers to the institutional and societal inequality [or skewed narrative] which is characteristic in stories the disabled population. Privilege, thus, has less to do with a choice of identity, and more to do with the disadvantage imposed from beyond us. So as an individual with impairments I am but one of the many millions affected by ableism and sexism. Ableism is sometimes stated as the power held in conversation that are not dominant, the one acknowledged as mainstream. These globe-local conversations have specific distortions, for example, they speak of disabled people as less human, ignoring their contribution or telling of them as less able (Chapman, 2021).  Returning to the d/Deaf question, as both ally and an activist, I understand that disabled people with hearing loss don't view it as an impairment, yet they no doubt face a forms of ableism. One such form has been referred to as audism: 

Audism has been described and applied in different ways… as “[t]he notion that one is superior based on one’s ability to hear or behave in the manner of one who hears” (Humphries 1977, cited by Heather Mole, 2018, p. 29)

People facing audism may identify as deaf to define their hearing, and/or belonging to Deaf culture to define their language – ‘those who use sign language and are members of the signed language-using community’ [Mole, 2018, p.29]. As individuals within the disabled population the choice of identity is theirs.  Heather also says: “for many deaf (as well as Deaf) people accessing spoken English takes work – either by using technologies and/or lipreading or using communication specialists. So whether profoundly deaf, hard of hearing or BSL users from birth it can be difficult to access spoken English (the dominant language)”.

 

From this perspective, hearing privilege needs articulating in allyship as the characteristic form of ableism imposed on the d/Deaf community. As a person that isn’t hindered by audism, my hearing privilege, I articulate my allyship in the ideas above.  I acknowledged sign language as distinct languages with meanings, equivalent to - not subordinate to - English, French, or Australian.  BSL, AUSLAN and ASL. Sign has communities of language, defined by different meaning  and  culture. I acknowledge many communities with their own culture and sense of identity, based on a shared language. 

 

In the most simplistic terms you could imagine a Venn diagram with ‘Disabled’ deaf and ‘Deaf’, with the Disabled people’s movement as space of overlap in a wider scattering and clustering of identities; unfortunately reality is far more complex, overwhelming and messier [than theory]. I refer to d/Deaf therefore to encompass all choices, because I believe self reference, association and community are personal choices to be acknowledged in order to be respected.

 

At the crossroads 

As I understand intersectionality, many disabled individuals face different characters of discrimination on multiple levels. Some face sexism and racism and ableism. Others face homophobia and ableism and audism. My own privilege, as I state above, isn’t about identifying as French, middle class or white, so much as not facing classism, racism or audism in addition to ableism.  

 

I have come to articulate audism, lookism and prejudice against speech impairment as specific form of ableism. 

 

As I’ve said before, joining in, aligning to, and developing knowledge are different things entirely. I speak of the disabled population as the estimated number of people facing ableism. Disabled people as those identifying as either having an impairment, conditions or difference that means their in receipt of prejudice, discrimination and inequality in society.

 

Grassroots organisations as those supporting the interest of the disabled population whether they identify or not charities, largely impairment specific, mostly concerned with a subsection of the disabled population. For example, people with a defined impairment.

 

I am very much helped by different definitions of community, association and network. Growing literature spells out the difference between them as:

•       community as an association typically defined by space or interest. For example a neighbourhood of a pottery class, where members join on their own terms or with specific activities in mind. 

•       Networks as a more formal group existing with a specific function, aim, problem or interest.

 

* yes we did have a initial conversation that went: “Mole!... Mole? …Mole!! Mole???” 

 

 

Bibliography

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

Carastathis, A. (2016). Intersectionality: Origins, Contestations, Horizons (Expanding Frontiers: Interdisciplinary Approaches to Studies of Women, Gender, and Sexuality) [Kindle]. Nebraska: University of Nebraska Press.

McRuer, R. (2006). Crip Theory: Cultural Signs of Queerness and Disability (Cultural Front) [Kindle Edition]. New York : New York University Press.

Michalko, R. (2002). The Difference That Disability Makes [Kindle Edition]. Philadephia: Temple University Press.

Mole, H. (2018). Narratives of power: Critical reflections on signed language interpreting.

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

 

 

 

My do-do list!

Years ago when I began delivering training I followed the methods of the day, giving participants lists of do/don’t say words in a session on correct language. Sadly, when doing a piece of research on respectful language, I found out learners felt confused by this. On other awareness training, I have myself been confused by ‘don’t say’ lists which left me fearful of having conversations about racism, classism or homophobia.  In many conversations recently, some non-disabled people have also said to me that they feel they can’t talk about disability because they don’t experience it. I do not experience racism, but I believe I’m part of the problem if I can’t articulate it adequately.

So this is my ‘do-do’ list, an attempt to respond to the comment "what can I say?!”

 

 

 

 

 

·      Do talk about the size of disabled population, stressing vast numbers, huge inequality, lack of visibility and wide variation. This helps contradict the assumption that disabled individuals are few and a separate group to those individuals facing sexism, racism, homophobia, religious intolerance, family and partners choices.

 

·      Do highlight the disadvantage and inequality imposed on disabled people. Articulate identity separately, because respecting choice in no way stops us from talking about discrimination.

 

·      Do make the assumption that to be visible at all most disabled people have no-doubt overcome huge barriers, simply to achieve life goals many others can take for granted. 

 

·      Do refer to D/deaf and Disabled People’s Organisations as the go-to for representation. Individual experience is the first step, but D/deaf and Disabled People’s Organisations offer a shared voice that adds activism and community interests to accountable storytelling.

 

·      Do refer to the societal and environmental aspects of disability discrimination in exactly the same way as you would frame a conversation about anti-racism or anti-sexism.

 

·      Do state clearly that organisational culture, and more broadly society, denies many individuals their human right to belong, which is a cost to communities.

 

·      Do ask about identity, if and when a professional relationship has been established. Disabled individuals will have different words for their experience, knowledge and wisdom on these issues. As do feminists, for example. Allow for this choice and respect personal boundaries. Illness, impairment and difference, contrary to society’s storytelling, are private matters.

 

 

 

Read more - Legitimacy, accountability and human rights 

 

Neighbours!

 Allies 4  

 

♬🎶 Everybody needs good neighbours.
Just a friendly wave each morning,
Helps to make a better day. ♬🎶

Barry Crocker

 

 

I’m finding it hard to write about how frightening shared spaces can be for me. This relates to the last blog because if people were introduced to the notion of being an ally at work, more of us would take this understanding onto the street.

 

I was trying to explain to someone on the street a while ago that I need to park close to home because I cannot walk far. It was her response that felt like a body blow.  "Why live here?’ She asked me.

 

On the face of it, it’s an innocent question. But the assumption beneath it was problematic. As came through later in the conversation, she was asking me why I hadn’t bough a house elsewhere. In ‘disabled people’s land’ I presume. Because, she kept asking why I’d moved into a normal [sic] neighbourhood...

 

“There isn’t a land for disabled folk!” I wanted to shout.  There are no houses with drives, level access, big room, adjustable kitchen counter heights, ground floor bathrooms... at affordable prices, they just are not built!! The idea that there’s a street, or suburb, where ‘you lot’ can live is also reprehensible. Yet it appeared to be an option for this woman. 

 

I have these conversations occasionally, or variations on a theme... unintentional bloops that escape the lips of those unfamiliar, and therefore reliant on ideas that don’t stand up to scrutiny.  I can’t help thinking that our neighbourhoods would be safer for disabled people if those so privileged by them were made to think. It must be wonderful to be able to negotiate a full day with having to worry about parking, access, toilets, bad attitude, rejection, challenges...  Privilege here is not being on the receiving end of a belief that disabled people belong elsewhere. The idea that we should somehow seek permission in shared spaces. To be held apart in groups, networks and communities, by the benevolence of those kind enough to let us in.

 

Being a community ally, is making sure space is not only open, but absence is noticed.  "You were not there, where were you?"  

Had we all received a modicum of disability equality education in our working lives, imagine how much safer our communities would be. Of course making the workplace safe is a priority. But we are born to be human not solely workers surely? Beyond familial relationships there are many connections that are critical to our sense of belonging. 

Our neighbours are wonderful, and mutual support, understanding, and cake are in abundance. But, on our street it’s Kevin’s enthusiastic hello that outshines mine on every occasion, a generosity that states I belong in his world!

 

As some will have noticed, there’s a progression in the last 4 (5) blogs. The sequence matters to me. I’ve moved from a personal, to a friendship, to a professional, to end on a community dialogue with purpose. I wanted to be able to show how our language changes depending on relationships, context, place and space. Not being able to refer to the intimacy within my relationship with my sister, makes it really difficult to point out how boundaries differ in the workplace. As a disabled woman, I look for allies everyday, people able to buffer the ableism and sexism the world sends my way.  In public spaces, I need others to know how to articulate the complexities and nuances the culture that surrounds us. Thankfully many do!! 

 

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  

Words on a journey

While disabled people are often told how to act more responsibly, in a narrative where we are assumed to be a cost to society. Research suggests our contribution is largely denied in mainstream debates that ignore our contribution, while the impact of crises affect us most.

Sustainable Development?

 

 

The image of the earth as a marble was a defining point in history, and for many it was the first presentation of the globe as a single entity. To this day it serves as a representation of the connection between planet and people, the environment and society. 

 

The earth you’d imagine should be a place where disabled people should feel they belong, storytellers in its story, part of its action. As a Disabled woman, I often feel I’m denied the role of its many storytellers. A single but authoritative voice among the many who holds its past, creates its present and shapes its future. But for many disabled authors our words do not count  as voices of authority, more often our experience is not counted, our tales falling outside the more accepted tales ... told by the less disruptive Joannas on the omnibus. In education her learning is not viewed as progress, in work her contribution does not count as paid, in housing her needs do not count as priorities, as an academic voice in texts her knowledge is bent and moulded to count as someone else’s data, as a citizen she is not counted as a neighbour, mother, daughter, wife or friend. While some plop their empties in the correct bin and call it being ‘green’, for many such a luxury is meaningless in the small matter of surviving the harm in a fight to stay alive in a world littered with words that are toxic. As the Adapt Now: A Global Call for Leadership on Climate Resilience report states:

Climate change exacerbates existing inequities by widening the gap between people with wealth and people living in poverty. (World Resource Institute, 2019, p. 2)

 

Until recent months, stories about our planet have talked of sustainability as an interest that is somewhat separate to the globe as an indivisible whole. In addition, rarely viewed as an imperative, discussions about human rights were not placed at the heart of conversations about sustainable development. For many the impact of growth on disadvantaged groups was ignored by those telling stories of the advantages growth bring. Thus, overshadowed by a denial of its implications for life on the planet, an ambivalence was evident in matters of equality and fairness. To paraphrase Hawken (2007), it was a choice, to get on the environmental bus or on the social justice one, while ignoring the impact of the later on the former. He argued that the wrong questions were being asked as both buses run out of road.

 

Growing evidence suggest that the negative impact of inequality is currently threatening the lives of harmed by as levels of unsustainable, unchecked and uneven growth impose hardship and destruction. Furthermore, issues of social justice are often see as either /or propositions, broadly: to save the whales or to feed the starving. It is only recently that the literature has grown proposing an and/and/and view of such matters, linking issues, interests and crises as a deeply woven into an uneven global fabric. It is with this storytelling that issues of social justice have come to be seen as deeply enmeshed in matters pertaining to sustainable development.

 

I do think, at the end of much hard work, that there has been a lag in the language, with new vocabularies only just emerging to define ideas relating to this complex emerging view. With regard to politics, populations, groups and their activities, shared tales  are often simplistic. Our storytelling mostly setting up the binary continuums that result in confused conversations where words poorly define much more nuanced ideas. The narratives used to define modern day lifestyles, the power held in the texts that hold ideas, can add to the oppressive nature of growing inequalities within social arrangements that fuel hardship and poverty for many, and injustice for all … 

Image with thanks to @_louisreed ❤️

 

To read more, and access references, do click on Link:

 

https://padlet-uploads.storage.googleapis.com/119788493/b676175e8bbedfbe1a22b9db7f2defec/Chapman2020PhD.pdf

 

 

Improving the world a word at a time

Are our measures of success in the current landscape changing the world one person at a time?

Thank you Bradford university for inviting me to speak in Disability History Month. A few thoughts on language...

[no right answers I’m afraid, relationships and context are crucial]

How do we define the disadvantage disabled individuals face, without running to risk of euphemism creep in ‘vulnerable’, pretty much everyone, or the embarrassment of having to identify individuals within a crowd? Either way it’s difficult no to introduce extremity to orifice in the time old tradition.

 

Let’s face it, the way we talk to each other is not the way talk about a group. When I talk with another person, I leave it to them to define themselves. They may refer to themselves as disabled, a person with a disability or as gay, B/black or Muslim. But, I tend to be as respectful as possible by mirroring the language  they choose to describe themselves. 

 

This is because I feel identity is both complex and personal. I could choose a number of badges, if put on the spot. But in one to one conversations these descriptions are rarely needed because the topic or shared interest is the focus of conversation - not me. The personal, if professional, nature of most interaction means I’m at liberty to choose what I call myself. Most often Mole will do, because whatever the conversation, my badges, labels and impairments rarely come into it.

 

Talking about groups is an entirely different thing. When I talk about the disabled population, I’m typically referring to the stuff I know through research and literature. The Ideas, numbers and theories in the public domain. I use a choice of words that is guided by groups too, such as D/deaf and Disabled People’s Organisations, Disability Studies, and disability literature. This is less the stuff of media, although many sources are now well informed. I came across the term rainbow literature recently, to indicate public texts often sharing personal experience, and non-academic writing now available beyond library paywalls.

 

The way I speak or write for public scrutiny avoids private choice where possible. I use evidence and testimony already available to many. This doesn’t mean I disregard personal choice, on the contrary I’m aiming to respect individuality.  However, as a professional and a community member, I’m aiming to follow the leadership of Disabled people as a group, their interests, their activism, their politics. That’s why I’m guided by the theory, the Social Model, to define the oppression many face. Like feminism, ideas and interpretation will change over time. Defining disablism and ableism has evolved to reach ever more nuanced meaning. However, not referring to the early thinkers or understanding a smattering of history is like referencing feminism without feminists such as Pankhurst, de Beauvoir, Roosevelt, Angelou, hooks, Lorde, Fawcett…  I don’t need to agree to acknowledge the way they changed the mindset of many, shifting paradigms on the landscape over time.

 

This blog is in no way a replacement for the amount of work required for a literature review, but I do find myself glancing over reference sections looking for evidence that the Disabled writers have been acknowledged. I am hesitant to even allude to a handful, as aware I would no doubt privilege one or two or forget a key thinker altogether. 

 

While words vary depending on context, when using disabled individuals I mean those for whom dis/ableism has an impact. Because seeking to identify who is or isn’t is fraught with issues, none more than drawing personal choice into a public arena. I use ableism as I would racism, ageism, classism, homophobia, sexism and the intolerance of many marginalised groups. Not to define human beings, but the specific oppression they may face.

 

The point I’m trying to make is that to have legitimacy, public writing needs to acknowledged group and a degree of shared storytelling. While I’m more than happy to share my experience it is a decision I make. Neither friend, peer, or colleague can demand it of me. Equally, when I speak about group, disabled people or women, I am mindful to have articulated a shared perspective. I’ve taken time to inform my writing with background, I’ve done my homework, the text is case sensitive. Ifnot as intersectional as it could be, I’m working on it, for the sake of accountability.

 

In the end I’m Mole or Dr Chapman, my interests are human rights and accountability, but disclosure is a choice that is down to me.

Resources added  at: https://padlet.com/molechaps/ashgatedsability

The M word…

Methodology -Thinking about storytelling

 

Thank you Prof Megan Crawford [@DrMeganCrawford] for inviting to talk with the PhD students from the research Centre for Global Learning at Coventry University [@CovUni_GLEA] .  Here’s a few thoughts about that conversation…. As requested, I’ve focused on methodology.  

 

Telling the story

The word methodology used to scare me, and it took me a long while to understand its meaning and its relevance to research and writing. After a conversation with my supervisor, in which I explained the difficulties I was having finding a 'paper' trail, he suggested I put these constraints down in a methodology chapter placed before the ‘literature review’. After staring at him somewhat agog, I did just this. Indeed, viewed as distortions, or bad reporting, the misrepresentation of disabled people’s interests in storytelling explained a wider context and impediments to the research.  

 

Who tells the tale is an important consideration in research. Accounts, like reports, annual reviews, or a thesis, are forms of storytelling. As the artefacts of organisational life they represent culture, and a form of textual evidence, that help tell the tale of an organisation’s activity. Stories are our archives, tell our past, the history of our times. Written for neighbours in time yet to read them. As feminists have given voice to women's interests in the she-story, existing he-story probably says more about who has most privilege – if not power. This view of pen- inequality articulates how some knowledge holders have a stronger voice than others, and therefore dominate many narratives.  

 

 

The question 

Ever a moveable feast, the ‘question’ I started with wasn’t the one I ended up exploring. The enquiry started as a hunch:  Why are disabled people not referred to as a group like others?  Why are their allies not viewed as activist like feminists? Why isn't there a more nuanced language to talk about disability? And why aren't there words with meaning thar are equivalent to institutional racism, patriarchy and sexism? At board meetings, I heard accountants call themselves feminists, but how do you describe reports from the position of an anti-what-disabled-people-are-oppressed-by-ist?  Because let’s face it anti-ableist is an unknown to most, and doesn’t exactly roll of the tongue. 

Textual worlds

In research papers I found there was a few sheets where I had hoped to find a library. When I searched through papers with ‘disability’ in their title few appeared before 1960, even fewer in topics that dealt with global matters. Pre 1960’s first-hand accounts of disabled individuals' experiences are hard to find in text. Most research is about them. In the few texts I did find, there was a noticeable absence of theory, reference to studies or equality was missing. From the 80s Disability Studies has been a growing discipline, yet its Key authors are absent in the roll calls of storytellers in tales of disability. 

 

This rejection lead me to consider travelling theory, a management perspective that seeks to explore why some theories are picked up and are blended into other disciplines, and others are domesticated [reduced to acceptable ideas] or never get beyond their own subject writings (Oswick, Fleming, & Hanlon, 2011). It seems that many theories are somewhat blunted by travel, indeed the more divergent ideas they include the more they are simplified or domesticated. Some are rejected altogether when not compatible with the adopting discipline’s existing theory. The question I ended up with was: why aren’t disabled people trusted as storytellers?

 

A legitimacy gap – a missing voice 

The methodology chapter, gave me space to explain a cultural rejection [orthotoxic], a widespread yet invisible force pushing disabled people to margins of communities’ activities such as storytelling. It helped me explain why as authors, disabled writers as a particular group within the writing community, were less likely to appear on the page. This power imbalance, explained how storytellers can be privileged or silenced in research accounts. 

 

The following literature analysis, from a human rights perspective, then highlighted how misrepresentation affects discourse in recognisable ways. For instance, the absence of disabled people speaking on matters of sustainability, despite the impact of economic measures most likely to harm them most. This erasure reflected a silencing of marginalised groups in global inequality more widely, most apparent in the rejection of authors from the Global South.

 

In academic texts, my major concern was the personal cost demanded from disabled participants. Traditionally the ‘disabled voice’ has been interpreted by a more privileged researcher. Viewed as data, individual representation when it did occur, is often stripped of institutional, political and activist positions. Furthermore, texts suggested that research on ‘minority groups’ often imposes an invasion of privacy can be triggering for ‘respondents’. Given that there is growing number of non-academic texts penned by authors clearly aligning to disability rights, why not use these? I love the term rainbow-literatures to describe these firsthand accounts, that have mushroomed in numbers as technology enables  individuals marginalised by education and employment. Viewed as a rejection of these, as poor acceptance of firsthand knowledge seems disabled people's experience has been written-out of research. replaced by an overbearing emphasis on clinical responses to disability understood as illness. No doubt driven by a wider belief in society that what disabled individuals need is care or cure. The storytelling leading people to turn to medical journals, rather than the tellers within groups or organisations representing the interests of the disabled population. 

 

I saw the matter of representing group interest as a question of ethical choice, as it was one of epistemological justice. I decided to turn my own question on its head, by asking what do accounts look like when the key tellers are disabled.  By writing an observation of organisational life, I was then able to use a reflection on it as a story to prompt theory. As a reflection on culture in spare me the ethical implications of crossing personal boundaries. As Spradley (1979) states you do not have to be in someone’s bedroom to talk about sex, it can be discussed in relation to its representation. The organisational offered a deviance in its rare view of a culture where disabled people are not erased but lead storytelling.  

 

Group authority missing in shared narratives

I found that while disability may appear on lists of groups with protected characteristics, disability theory rarely appears in discussion in later chapters. For example, while some authors will refer to disabled as an identity or protected characteristic in their introduction, however if it is referred to later it’s usually positioned as an ind problem. Discussions generally do not refer to the social model, and/or institutional discrimination. Rather than build in intersectionality, discarding key ideas of adopted theory suggests a rejection of disabled authors as knowers. Blending theory in an equitable way could help give increasing definition to the multiple oppressions many individuals face within groups. And  identity is rarely single and a binary view excludes, more generally I noticed many theories domesticated by more privileged writers, who ignore the ideas they don’t agree with, and continue to perpetuate narratives with harmful stereotypes.  The use of ‘and’ maybe important, suggesting ‘in addition’,’ with’ and ‘together’, in blending theories viewed as cumulative not oppositional.

 

The way I read it, Feminism has crossed boundaries that are still resistant to Critical Race Theory. Quite possibly because there have been more academics willing to consider the implications of the former, while fewer have had a nuanced language to articulate their own privilege without the shame implied by the later. Who knows....  Epistemic injustice, with the characteristics of ableism, in research and society, is a distortion that explains a storytelling that speaks to 5 myths the silencing of the disabled population (Kafer, 2013). 

 

Texts, knowers and accountability 

Trying to define my knowledge as writer, not necessarily as an author, was a matter of accountability. Defining my 'gaze' was far more than an issue of individual experience, it was one of defined knowledge-base and professional wisdom. Defining my activism was a way of articulating my sensitivity as a researcher. Rather than assume neutrality, I used ethnographic values [not methods] to express deviance in the world. 

 

Suggested by Sinclair (1995), and accessible in many ways, the idea of a chameleon serves well as a metaphor for accountability. Because, as an animal that can change its colours to represent its surroundings, as the picture illustrates the beastie still manages to represent others without changing itself radically.  With Accountability as an allied position, organisations wishing to represent their communities, can choose to state the interests of groups within texts and conversations by stating their interests explicitly within its accounts – its storytelling.  Articulating shared, or distinct, interests need not change purpose, or existing integrity and vision. Equally a human rights approach, in writing on the authority of named groups highlight the possible erasure of voices within civil rights movements.

 

Mapping dialogue 

I used a graphic, the  web of accountabilities, as an idealised frame to qualify themes in conversation. Each radar indicating a type of dialogue identified by the analysis and accout-ability chapters. The characteristics of each dialogue allowed me to qualify the amount of time spent talking about various aspects of people’s Human Rights within organisational conversations.

 

 

I found that an organisation’s commitment to uphold the rights of individuals from marginalised groups can be apparent in the naming of their interests in text and conversations. Legitimacy may seem accidental from a theoretical standpoint, but accountability was in evidence in most conversations. Critical to human rights, being account-able speaks to legitimate engagement. Naming ableism is a further step, because it is not enough to not intentionally hurt, an organisation needs to speak to the discrimination groups face and the cultural oppression they are disadvantaged by.  Without conversation, and a language describing the nuance, being nice to individuals has minimal impact on social aspects of belonging from a community perspective. 

 

 

 

Reference  

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

Mauthner, M., Birch, M., Jessop, J., & Miller, T. (2002). Ethics in qualitative research. (M. Mauthner, Ed.) London: Sage.

Oswick, C., Fleming, P., & Hanlon, G. (2011). From borrowing to blending: rethinking the processes of organizational theory building . Academy of Management Review, 318–337.

Schein, E. H. (2010). Organizational Culture and Leadership. San Francisco: Jossey-Bass.

Sinclair, A. (1995). The chameleon of accountability. Accounting Organizations and Society, 20(2/3), 219-237.

Spradley, J. P. (1979). The Ethnographic Interview. Waverland Press.

 

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.