Breaking The Bias

With huge thanks to Emma, and the University of Birmingham alumni team [@BBSalumniUoB]!! Let’s break the bias together! 

Mind the box

Our minds need to deal with a huge amount of information on a daily basis, so it’s unsurprising that we tend to lump stuff together. The boxes we shove information into, the stereotyping, isn’t the problem! What creates bias is the lack of thought we give to this boxing and its impact on our feelings and the difficulty we have in retrieving stuff. We rarely question, for example, whether it was put away correctly in the first place. Our boxing system is neither nuanced nor sensitive, it does not matter whether ideas are good, bad, right or wrong, in they go largely unquestioned. It seems volume matters more than accuracy, if what we hear is loud enough, and what we see is noticeable enough, we lob it in. If we hear sexist, homophobic, and racist comments they end up in a box. We have boxes full of ‘em.  Indeed, confirmation bias will see us actively adding conspicuous anomalies to our boxes, rather than looking out for the positive contributions individuals and groups make to the world around us.

 

When we think too fast, we react to the box, rather than take time to reflect on what is inside it - what we’ve seen, heard or read. Our judgements are skewed when based on what is assumed, our reaction likely to be in tune with what we feel – not at odds with what we think, had we taken time to question these feelings.  

At the crossroads on Women’s Day

As a disabled woman, I can speak on how ableism and ableism intersect. I used to be quite baffled by how emphatically some have rejected my experience over the decades.

A colleague once asked for my address, when I got to West Yorkshire… "no" they said … I looked at them somewhat confused. A stream of justifications followed, explaining why they had assumed that ‘West’ was not a region and why they felt I was wrong. I had to remind them it was my address, therefore I was most likely to know if it was correct or not. It was an uncomfortable moment for us both but illustrates quite clearly how unconscious bias works to confirm prejudice. A prejudice that ordinarily was absent in the appreciation of my contribution until that moment of inattention. Prejudiced was the assumption, in the split-second reaction, influencing my colleague's choice between my truth and theirs [here mine was rejected, but maybe I would have accepted theirs had I not been so certain of my own address - positive prejudice].

 

I’ve experienced this sort of thing many times, and the more I notice it the more it infuriates me. While I understand how bias happens, it’s no less painful to hear someone not believing you. Furthermore, BECAUSE it’s unconscious, I am likely to rattle someone’s certainty when opposing their feelings. They may feel they are right, but would possibly agree that the ideas they hold may be wrong. So it is of little help to point out the reaction, without the stereotype it is based on - the stories that are rarely questioned. Which makes the bias, or unchallenged assumption, especially difficult to stop. Because engaging in the stereotypes, lurking in everyday myths, demands a willingness to become aware of how prejudice works, and the lack of awareness that drives it. How seemingly unremarkable ideas lead us to have beliefs that we do not articulate.

 

Language and culture 

Our language and our culture create our world, what we say and what we see, is the fabric on which we weave our own story. Language matters because what gets the most airtime becomes the most trusted story - in the bigger storytelling. The shortcuts we take, for example in office or technical terminology, often reinforce either negative or positive ideas, particularly where wording does not help convey the complexity beyond our focus. Largely we stop questioning the assumptions we encounter daily when we hear the same story time and time again. If an idea is at odds with our experience [West Yorkshire] it will be dismissed, in time the exceptional is ignored and alternative views may disappear from the conversation altogether. When stressed, embarrassed, tired, or pushed for time, we rely more on feeling. It is then that we are less able to hear alternative views. Sadly our feelings aren’t critical or nuanced, we are far more likely to react to the box than think about what’s in it. Unless we're careful, we stop questioning the dominant narrative: the sexism, racism, homophobia, classism, religious intolerance, and the rejection of family or personal choice, because it's just too unremarkable being around us every day.

 

Unfortunately, when the ideas about a group of people are largely negative, our thoughts and actions may alter. For example, if we hear often enough that widget makers are cranky, we might approach them with trepidation- without even realising why we’re acting differently.  To unlearn bias we will need to identify very mindfully that the assumption - cranky - is worth questioning to then think quite deliberately about its veracity. Are the widget makers I’ve met cranky? Is it likely that ALL widget makers are equally cranky? Is it more likely that among widget makers some may be cranky but on the whole no more than any other group? In addition, overall there are more differences between widget makers than those not making widgets. Have widget makers had bad press over the years? Could their actions also be a reaction to this bad PR!?

 

Questioning the assumption

The bias, regarding sexism and ableism, comes from what we’ve seen and heard about disabled women over the years. Silence, or negative ideas, may have led to a list of unarticulated beliefs that sway our judgment, and while the ideas we boxed unquestionably may seem incongruous when exposed, it’s likely we react to them without thinking. Gladwell suggests we react so fast, in the blink of an eye, that our excuse is built on reaction rather than the assumption. the bias, then, is reinforced by thinking, rather than the idea exposed for myth. In this cycle, while evidence may be ignored, experience sits at odds with wider understanding becoming less important than our experience.  

 

While we ignore the impact of stereotypes on our actions, we’ll also unwittingly seek to confirm our bias, by not noticing the negative implications of our poor practice. Those in receipt of prejudice tend to react, rather than flourish, in an internal struggle against the discrimination they encounter. Energy directed in defence will be unavailable for advance. 

Breaking good

 Being nice does not break bias, particularly when it reinforces an otherwise unarticulated belief that some women are needy or deserving of pity. Exposing the myths is more important, a good spring clean of what we've boxed. Disabled women are no needier or wanting of pity. Exposing the negative ideas, those we see all too often when we search for them, and encourages us to identify the sexist/ablist assumptions behind so many storylines. Courageous, vile, uneducated, stupid, unfeeling - the many characterisations of cranky - imposed on groups and individuals.  

Breaking bias calls on us to replace complacency with action. To notice the assumptions, if not in the moment, soon after it! By asking "why did I feel I had to question and correct Joanna Jones?"  Reflection in action may be better still "before I interrupt Joanna, I better trust Ms Jones, and stop myself from interrupting or correcting her". Better still is to look for the harmful impact of many assumptions, hold them up for scrutiny, and think about the unintended consequences of what we say.  Thinking about Joanna Jones’s experience having to negotiate sexism and ableism, and understanding her success in breaking expectations- an achievement that needs to be evident. Most probably proof of her tenacity - not a fancy tale about her failure.

 

Reflection for action [rather than -in or -on action]  in its pre-emptive nature may be the best solution to breaking the bias. Not a quick fix, given the amount of homework needed to explore the alternatives, but certainly a route to shedding a light on the negative attitudes we are led by when we are not full of care. As we are called to think slow, rather than quick, let’s be willing to take a little time for the effort to appreciate the strength and knowledge in others with the sensitivity we owe them.

 

 

Bibliography

Agar, M. (1994). Language Shock: Understanding the Culture of Conversation. New York: Harper Collins.

Anderson, T. (2017). Telling the story of disability. Retrieved 11 10, 2018, from Washington state university libraries: https://research.wsulibs.wsu.edu/xmlui/handle/2376/12238

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.

Bryant, Watson, & Philo. (2011). Bad News for Disabled People: How the newspapers are reporting disability. University of Glasgow, Inclusion London. Glasgow: Strathclyde Centre for Disability Research and Glasgow Media Uni.

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.

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.

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

Deal, M. (2007). Aversive disablism: subtle prejudice toward disabled people. Disability & Society, 22(1).

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

Hughes, B. (2015, Sept 11). 'Disabled people as counterfeit citizens: the politics of resentment past and present'. Disability and Society, 14.

Kahneman, D. (2011). Thinking, Fast and Slow. London: Penguin.

Shohamy, E. (2006). Language Policy: Hidden agendas and new approaches. Abingdon: Routledge.

 

 

 

Nelly in the room

In the last post, I distracted myself so much with a metaphor about elephants I thought I’d give it a fresh field here. So this is an attempt to give the pachyderms shape. It is a metaphor for ableism, not an analogy, I'm not talking about the animals here but prejudice and discrimination. 

 

It is a recurring infuriation that many do not recognise ableism, the bias, discrimination and injustice Disabled people face. It has shape, I think, as an unwanted and invisible guest wherever people gather. Ableism, the elephant in the room, is a spectre in most places – and on zoom. It’s a daily wrestle, therefore, having to explain that the elly really exists and that while it’s a materialised ele’ment conjured by language, its footprints leave traces in our hearts – if not in the custard.

elephant calf with mother

I feel a sense of responsibility to point it out, we need everyone to see it, because I want it to be ours - not mine. It hurts when people deny it, I can't wish it away. When they do see it, people often think it’s exceptional, not a common sighting. but so daily I feel crushed, by a sensitivity to what often seems invisible to others. I see its shape every day, in every group, in every space, on every street, in every town…  

The elephant is very much alive in the spaces I want to feel safe in, I recognise that while some also see it, few act as allies and ignore its footprints.  I’m frustrated that people can’t, or won’t, see how toxic it is to so many [1 in 10]. As it parades openly on floors and in corridors. It’s purple tusks threatening, prodding, belittling and inciting rage… I find I unwittingly react to its crushing size, feeling threatened by possibility of threat if not presence of harm. “Don’t react!” they say “it’s not here now!” 

 

The idea that we’re either elephant-ridden or elephant-free makes poor sense. I know that many are also crushed, herds of red, green, and pink tusks bristling behind every door. Still more in the sights of several at once, beware the jab of the purple/pink tusk my friends! Truth is if we are free of one, we’ll probably face another. None would be a luxury, not 3 but 2, a privilege! I'll see the tusk of classism, if you see that of ableism, and we'll share the fear of sexism. 

Too few may indeed experience a lifetime of elephant-free living, what a luxury that must be. As privilege though, the tension is acknowledging others, not by over-defining yours but pointing to the herd. Don't be the one putting huge energy into ignoring one, by avoiding it, dismissing its threat or sneering at the way you hear others speak about it. Not taking responsibility, lets bad practice slips off the hoof, difficult experience is denied – “no elephants here!”. From the mammoth to the calf, impact is reduced by acknowledgement. “I saw the purple tusk coming your way, take good care!” Because stepping around it will hurt less than walking into it. (besides the latter cannot jump! Fact) 

 

Most fear monsters where juniors pass, but grappled we feel by our own if not the herd that threatens others. Some may indeed be far more able to ignore the elephant, it would rather depend on whether it’s been thrown at you, charged passed you or sat on you. Again violence real, imagined or accidental makes you fearful. Small shocks, repeatedly, intentionally or occasionally, still add up. Whether red, blue or purple tusked, I’d imagine the weight is considerable, but two or three at once and the impact might be overwhelming.  Where to start with hierarchy, when cumulatively numbers equal pain. It’s not the elephant that is better or worse, but a well-aimed tusk or a multitude of stabbings.

 

Being aware of other people’s threats is challenging, when your own have you pinned to the ground. Tomes of misrepresentation adding to those creating their own comfort among the tangles of debris left by yellowed manuscripts in arcane fonts. Ways of living long left unquestioned, never cleared to reveal challenging legacies. Elephants of old, shed skins and leave footprints the size of chasms, the fear still fresh, even if the harm is now past. Stories of old, not a telling with hope. 

 

So with that I'll pack my trunk, and find my way to the circus ........

Trigger warning - thinking hard hurts

I’ve really struggled to put words around this topic, so please share stuff in the comments if you can. I was recently at a meeting when a trigger warning was given in the opening words. Initially, I was stunned, then relieved, then angry, then reflection on the action changed the way I thought about trigger warnings. 

 

Thank you, Jo and Elyssa (@JFletcherSaxon @elyssa_shack) for your thoughtful, intentional and respectful practice. I know safety doesn’t happen by accident, you took steps to keep us safe.  I thank Catina Barrett from WLN, her practice and writing have changed my perspective, helping to deepen my thinking on this subject. Her words are my jump-off point here, Catina writes on trauma:

… feminists changed that definition to include domestic violence, to include sexual abuse and harassment of women, and others, but in particular, of women. And so I think the inequalities that we see are intersectional, transnational inequalities.  (Joyfull Education)

 

Complexity is not easy to convey, because these things are seldom simple, so let me unpack...

 

Trigger warnings are typically used to give people with post-traumatic stress disorder, and others who have experienced trauma, an idea of the content they're about to encounter. The warning is intended to prepare those readers - or viewers - to expect words that may trigger a significant, and possibly debilitating, emotional reaction. PTSD, a response to trauma, is sometimes a result of hate crime. Hate crime is defined as: any criminal offence that is motivated by prejudice - sexism, racism, ableism, classism, homophobia, religious intolerance, individual and family choice  – the hostility based upon a victim's difference or a perceived identity. The literature articulates hate as extremely hard to recognise by those privileged to not experience it, and because institutional culture helps hide violence,  therefore prejudiced behaviour is hidden from public view.

 

I was stunned

Feminism might not strike you immediately as a triggering topic. But, if you take a minute to think about its opposition to misogyny and sexism, it’s clear that conversations will involve the articulation of a characteristic oppression - sexism. Feminist conversations, therefore, will articulate the violence against women that remind so many of us of the experience of pain and shame.

 

To address sexism, as discrimination and injustice, involves discussing the ideas that fuel aggression, the misrepresentation of women found in those narratives that drive hate speech.  We can’t talk about a whole population’s safety without talking about the specific characteristics of an oppression weighing on them. The ideas that build cumulatively to marginalise groups. Oppressive organisational and institutional ideas, weighing on individuals within groups, that ultimately play out inequitably across whole localities.

 

Talking about equality, therefore, requires an intentional warning to create a courageous space, because injustice is hard to talk about. Should we ignore the impact of past pain we are likely to impose its reality once again. The experience of inequality is at best unsettling, and if you’re a victim, then re-living violence can be distressing. Being forewarned tells those in the room that this lack of safety and individual’s pain is acknowledged. Taking responsibility is key here, the warnings are intentional, and demand the knowledge that what will be shared may harm. Disregarding this potential harm, unfortunately, ignores the victims in the room. Furthermore, telling someone to feel safe, puts the onus on the victim to anticipate and then manage their own distress. It’s this imposition that denies experience, by silencing feeling, rather than speaking to the impact of sexism - action and ideas that are often violent, upsetting and oppressive. 

 

Then relieved

Practices that keep us safe are sometimes seen as over the top, because they aim to help the few, and they are seen as superfluous to the most. Where badly explained, they can be assumed not to matter, and often tend to disappear in the rush and informality of a shared space. Unintentional comments, such as "we don’t need introductions, this is a safe community, we respect each other…" may stop us from using the better practice of taking care and/or doing the safety checks. Forgetting those most harmed stops us from thinking about the present harm of brave conversation, and ignoring the triggers to those already carrying the pain of past hurt. The very warning of sexism, racism, homophobia, religious intolerance, classism will stir feelings, but at least allow the individual to make decisions. Telling people that they can turn off the camera is explicit. It calls us all to acknowledge what will hurt some is in the room.  It draws the group’s attention to the room - its elephants. 

 

Then angry

So, why anger?  It suddenly occurred to me that I’d never been in a space where I had been warned about the ableism I was about to experience. Never!! I’ve seen trigger warnings, but rarely about ableism - the oppression disabled people face. This, I think,  has a lot to do with language and a wider lack of nuanced definitions.  Too few of us work to a written definition of ableism, fewer still engage with its parity to other characteristics, the understanding of institutional discrimination and societal injustice. The forces that drive ableism, that many will not equate to harm or oppression. This lack of fluency translates into poor practice, for example being asked to not make a fuss, or to ignore hurtful comments because they were not meant, rather than exploring why ideas can be harmful. Far more oppressive, in my experience,  is that those most triggered are asked to share why they feel uncomfortable. Again adding to the initial impact of disrespectful wording and poor practice, by being asked to explain why ableism, for example, is traumatic. It’s rather like having to describe what is crushing you, to prove how really painful it is. 

 

Leadership 

Viewed as an ability to account, accountability calls us to question the organisational impact of business activity on populations. Therefore, it is not enough to just consider the people in the room, certainly a good starting point, but the locality more widely. As statistics suggest, disabled people in any locality make up 1 in 10 [of which fewer will identify as Disabled], then most rooms need to be safe. The trigger warning, therefore, needs to address the possibility of the people in the room, gestimated on population. Trigger warnings are required, therefore, without anyone needing to raise a hand. Because, if demand identity - or victim’s disclosure - then we’ll doubly add to potential discomfort and harm.

 

Without the trigger warning, erasure replaces accountability, as the power dynamics shifts blame onto those in receipt of harm – not to the topics of conversations that fuel it. Highlighting possible harm in a trigger warning, by defining the ageism, classism, racism, homophobia in the room, demonstrates the direction of responsibility. Better to articulate warnings at every meeting, calling attention to the space isn’t safe than impose the dismissal of unfair rules, barriers to participation or the harm of meaningless wording. The aim is to highlight the violence, not perpetuate an assumption of equitable safety. Telling me to fit in isn’t kind, but an acknowledgement of difficulty Is, I can live with Imperfections, but I’m oppressed by denial and lack of acknowledgement.

 

Trigger warnings, from this perspective, is the articulated accountability – reflection for practice - in stated acknowledgement. The ability to view the potential harm of a courageous conversation. It is the responsibility taken to give a heads up, by saying ’’we understand this can upset”. A seismic shift in power-sharing, because taking account of potential harm, demonstrates a voiced responsibility for safety.  

 

If you are not clear as to what may be triggering then best not go public. Celebrating community and holding abuse up for scrutiny are very different. If you are sharing stuff on social media, your readers will value a trigger warning if content is about the harm imposed on groups, because those viewing your content are a diverse group and some will be victims.

 

 

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 

 

Exploring Accountability

Human Rights and Legitimacy from a Disability Equality Perspective

Acknowledgements

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

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

Abstract

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

Living on the edge of the edge

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

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

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

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

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

Textual worlds: stories

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

Accountability, legitimacy and the civil rights movement

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

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

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

Webs: Culture and language

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

Storytelling: individual voice, group authority and shared narratives.

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

Working wisdom: Deviant by design?

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

Human rights:  Tiers of harm - narratives of injustice

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

Dis-tory

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

The Disabled people’s movement

Political power, strength and theory

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

Web of accountabilities

The visit: Bathing the room in sunshine

People natter!  Writing in the Field:

In the chair: writing in the library 

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

Talking up radical hospitality

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

Talking up citizenship

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

Talking up choice

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

Talking up control and wellbeing

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

Talking up anticipation

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

Pot structure

Words for our worlds!

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

Account-telling as craftivism

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

Anti-ableist theory

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

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

Final threads

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

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