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 ........

ME in FE - Hayley Seward writes

I’m over the moon to share this space with Hayley this week. I love her insight, knowledge and honesty. Thank you for your wisdom awesome woman! 

Working in further education is by far the most rewarding and enjoyable career I have experienced, I’ve worked on market stalls, in stores, telesales and then for the police for 9 years before making the leap into lifelong learning.

Growing up non-disabled I always took my health for granted and unconsciously never really understood how things could be for those who grew up differently to how I did. Towards the end of my career with the police (working in operational police training) I became unwell and was diagnosed with the Flu, I returned to work before I was fully recovered and subsequently caught acute sinusitis only a short while later, this time I didn’t recover. The malaise, the pain and aches seemed to be a permanent feature and my energy went from being almost constant levels of (annoyingly) hyper to practically nothing, I couldn’t think properly, it was like living through a fog of just wanting to sleep and feeling physically very weak.

My GP’s were excellent, you read a lot of horror stories from people in the same situation where they struggle for years without answers but my story was very different. Three months after my symptoms started I was diagnosed with post-viral fatigue and advised on how to try to manage symptoms and increase energy levels, I was given antibiotics and other medications to try and eliminate anything else that might be lurking, I had blood tests, scans, xray and what I consider to be a very thorough investigation, at 6 months however there was no change and I was referred to Sheffield IAPT services and counselling to learn how to deal with my new life.

The acceptance of what was now my new reality was a difficult adjustment, I was used to mountain biking at least twice a week and maintaining regular fitness to trying my hardest not to fall asleep during the day. I no longer had the energy to do anything other than work and look after my daughter, my social life was a distant memory and I do feel like I went through a period of grief.

My employers at the time weren’t very understanding and it just so happened that I had graduated with my PGCE not long before falling ill, I applied for a position at Chesterfield College and they are simply, Amazing. I was really open about my condition from the date of application and they couldn’t be any more supportive, my new manager contacted Occupational health for advice and put in measures to ensure I wouldn’t become overwhelmed, she regularly met with me to ensure I was ok but otherwise just treated me like a regular member of the team. I have a new role within the college now and my new line managers are just as accommodating, we’ve been listed as a great place to work and I wholeheartedly agree with that accolade.

It’s been four years since my diagnosis and although I’m not at my pre-CFS/ME level of fitness I do have a happy compromise that I work hard to maintain.

What works for me is pacing, one of the hardest lessons I learned was the ‘boom and bust’ cycle. I would get bursts of energy and try and recapture my former life to only be hit with a crash 1-2 days later, feeling worse than I did before. I began pacing (with drs advice) taking short walks daily, even if just for 5-10 minutes and to gradually increase this over time, I also stopped sleeping during the day and began to monitor my diet much more closely. I have good days where I feel I can take over the world and then sometimes I feel like I’ve done 4 nights without sleep at a music festival. I don’t beat myself up about it and I am much happier now.

I made changes in my home life and as a result of managing my energy I also found I began to re-inforce my own boundaries and I have become much more self-respectful and dedicate my time to what is important to me, my family, my students and my passions (not so much the mountain bikes)

Here are my Top tips 

• Mental exhaustion is just as tiring as physical, if someone or something is draining your energy, listen to your body and switch that connection off.

• You are still you, you may have to let go of parts of your identity but you are still you (and you are amazing) 

• Re-invest in yourself, So you can’t mountain bike everyday life you used to? Find another activity that makes you happy.

• Follow your Dr’s advice, we all react to things differently, I find pacing really effective but others don’t.

• Celebrate the small wins, create a Ta-da! List and mark off all of your achievements, not a to-do list.

• You still have your voice, say no when you need to, ‘well meaning’ partners or family members can become smothering with their ‘help’ and if you don’t want to take part in social activities, it’s ok to say no.

• Don’t be afraid of unsympathetic managers, It’s not your fault they don’t ‘get it’ the Action for ME website has great tools for managers of staff with CFS/ME, Occupational health are amazing and ask your GP’s for support if needed, Mine wrote me a letter as proof of diagnosis when I was first experiencing issues at my previous employer.

• No job is worth your health, It’s wonderful to be passionate about your job and you should be, but saying yes to everything you are being asked if it impacts on your health is counterproductive, if you exhaust yourself and crash you could be off work which would have a negative impact on your morale and your role.

• Connect, Having friends and peers who are experiencing the same situation as I am has really helped me to understand my own experience and the wider community, all are welcome to link in with us at Me-in-Fe, join us on twitter @MEinFE1 or by email meinfegroup@gmail.com

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  

A jar full

I really like Brené Brown’s idea of a jar as a metaphor for trust (2012). The idea works really well to explain the impact of micro- aggression. The way I read it, trust isn’t an all-or-nothing deal, it very much depends on how much mutual respect has built up preceding a specific event. So for example, if on the whole someone has been particularly thoughtful around me [pretty full jar] I’m far less likely to take an aggression seriously. Equally if I forget to phone, I’d hope most would appreciate the effort I’ve gone to previously to keep in touch. Over time trust grows in relationships, allowing effort shared to find a rhythm in fair exchange. I might do the cleaning more often, if you peg out the washing… I’m happy to do what comes easy or I find less stressful, if in return people do what they find easier while acknowledging effort made.

 

Credit  @inteligencia_eco

Problems multiply when stereotypes skew expectation and reciprocity. For example, when people assume same effort equals same task. If, like many disabled people I know, energy is a precious commodity, then meeting someone half way is far harder. This will empty the jar over time. Many will no doubt pay this ‘relationship tax’ without much question... My ableism is so well embedded I have sought to add twice as much to the jar in the past…. Unfortunately, I literally can’t do it now, I simply don’t have any jar-stuff to spare. By breakfast I’m struggling to keep going. Most people get this, until they forget. Then aggressions may slip in, but on a full jar little is lost. Bigger harm is done when people don’t think to begin with, assumptions then tend to tumble from lips, in ways that challenge those of us least able to interrupt their impact. Personally, I find people are far more willing to accommodate for physical effort, but more likely to ignore the emotional demands of chronic issues. These can be debilitating, if not draining. 

 

Evidence suggest that the disabled population pay a far higher price than most people think in terms of fitting in. The emotional labour is huge! The energy involved in participation is expected and rarely acknowledged. This means that in order to be part of shared activity, it up to disabled people to pay the cost. This often means ignoring, or playing down, the micro aggressions that – while unintentional – suck the joy out of being together. Most people guess that their experience is the same as others, therefore it’s harm to repeatedly keeping in mind that some may find it challenging or difficult, and very tiring, to be in the room. The storytelling we share rarely highlights the difficulty people face, more often the telling sits with the generosity of host good enough to open the door or respond to positively. Avoiding micro aggressions demands two things, very much like empathy, it’s a double loop. First we need to acknowledged that what doesn’t not upset us, ableism here, may be painful to others. Secondly, in conversation we need to avoid repeating hurtful assumptions without thinking. For example, rather than ‘no way’, ‘you’re joking’ or ‘never happens!’, say ‘yeah, I can imagine living with that is hard’. 

 

 

From the thesis

 

A history of segregation hasn’t helped, 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 climate where disabled people are subject to daily attacks and the nature of the crisis in its manifestation emerges from far wider vilification (Quarmby, 2011), hate and harassment. 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 the multi-layered juggernaut it is to those who can articulate it. 

 

 

Works Cited

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.

Brown, B. (2012). Dearing greatly: How the courage to be vulnerable transforms the way we live, love, parent, and lead. London: Pengiun Books Ltd.

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.

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

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

 

Exploring Accountability

Human Rights and Legitimacy from a Disability Equality Perspective

Acknowledgements

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

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

Abstract

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

Living on the edge of the edge

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

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

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

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

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

Textual worlds: stories

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

Accountability, legitimacy and the civil rights movement

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

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

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

Webs: Culture and language

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

Storytelling: individual voice, group authority and shared narratives.

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

Working wisdom: Deviant by design?

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

Human rights:  Tiers of harm - narratives of injustice

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

Dis-tory

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

The Disabled people’s movement

Political power, strength and theory

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

Web of accountabilities

The visit: Bathing the room in sunshine

People natter!  Writing in the Field:

In the chair: writing in the library 

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

Talking up radical hospitality

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

Talking up citizenship

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

Talking up choice

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

Talking up control and wellbeing

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

Talking up anticipation

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

Pot structure

Words for our worlds!

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

Account-telling as craftivism

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

Anti-ableist theory

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

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

Final threads

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

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

Our Story. But who's words?

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

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

 

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

 

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

 

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

 

Individual stories

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

 

Groups and privilege 

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

 

Working mindsets and institutional terminology 

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

 

National debates 

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

 

 

Global injustice and unsustainably 

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

 

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

 

 

THE ACADEMIC BIT:

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

 

#blogoff #HumanRights #legitimateAccountability #PhudBingo 

 

 

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