Exception not exceptional!

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

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

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

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

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

 

Pots and Pans... and human rights!

Given the scale of the work I have achieved recently, questions about the PhD research are far more easily answered than a synopsis. 

Here are a few questions sent to me recently from colleagues in Australia. If ever there was proof the world is an entity, this view of it as a marble speaks to me. As I rise at 5am Huddersfield to speak to Sydney at 3pm, the connection seems greater than the distance. 

In your experience - how has good supported decision making been conducted by support people?

It really depends on context, as it frequently is with these matters, because variation is the huge problem above and beyond the smaller problem. In the organisation chosen to do my research, for example, professionals were skilled at supporting disabled individuals. However, because the organisational shaped enabled leadership activity, people were able to put  choice first - and thereby honour needs, wants, and wishes - within their daily work. More typically, organisations start with their own funds, which they then divide a proportion off, and then offer each individual a package of available options – no real choice. As I worked I began to see that with a language that speaks to the values of inclusive practice, culture tells a story of human rights. By observing this culture, I identified 5 ways in which conversations responded to Disabled people’s interests to support a more legitimate dialogue.

Working wisdom: Deviant by design?

When we ask whether we are listening to disabled people, it is important to think about Disability Studies and The Disabled people's movement also. Because one person’s experience cannot answer questions of responsibility to groups or population. We do not need to ask who is disabled, to address discrimination and inequality faced by a group. Individual knowledge is limited, and is highly skewed, because the world we live in provides ample negative ideas about  groups, and populations, that can be harmful. [For the disabled population disablism and ableism, name structural and societal oppression] . 

Being an activist has critical relevance within the research here, because who gathers data, analyses it and disseminates it, has great power. Therefore, blending knowledge of Disability Studies and disability equality, to personal experience helped balanced the storytelling  of the research tale. Defining working wisdom thus, is not about striving for neutrality but being explicit about subjectivity, and acknowledging authorship - not penship. 

How have you noticed people have been good listeners - what are the skills needed for this?

Again, it’s a nuanced matter. On the whole professionals seem very happy to hear things that fit their world view, their existing professionalism or technical understanding, or personal experience. What they find hard to take on trust are ideas that differ from their common assumptions. Not hearing, or misinterpreting, Disabled people ultimately gives a  conversation that distorts stories in a ableist way. 

Later, when conversations are used to articulate ideas in text, analysis shows the misrepresentation of Disabled population is visible in quite specific ways.

Tiers of harm - narratives of injustice

I identified misrepresentation in 5 ways:

1.     Global narratives, show a lack of nuanced terminology to describe the north/south effects of globalisation led by economic inequality, and their impact on the size of the disabled population, linking unsustainable consumption to disability a product of inequalities and growth.

2.     National narratives within domestic debates tend to flatten a far more complex articulation of community that has a bearing on the interaction between identity and group membership. 

3.     Market narratives that conflate issues of business with community interests and thereby extend dominance over the disabled population in matters of rights – particularly citizenship.

4.     Non-representative narratives influenced by market ideology, further push disabled people into the consumer role of passive recipient of the commodification of services.

5.     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.

When communication is well understood, especially for those that don’t use words to communicate, what are the key skills needed of supporters?

Key skills include understanding human rights as a multifaceted conversation that involves disabled people, their interests and their politics. Viewing accountability as web helps qualify direction of conversation under 5 themes:  Political dialogue, Public dialogue, Innovative dialogue, Financial dialogue and Civic dialogue.

As the figure above illustrates if we solely talk about money, particularly within our consumerist society, we risk not exploring what has value but cannot be bought. Moving from the area within the feint line, to an extended dialogue involves the inclusion of other themes – the darker line. 

What are the elements of communication that helps people to feel understood?

In my research I looked at the culture within services that enabled fuller dialogue along the webs axes. A culture that ‘bathed the room in sunshine’, I described its elements as ‘talking up’ dialogue, as it helped extend the conversation in the directions  named above. Answering the question: ‘What struck me?’ a text emerged describing 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, 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!

The research 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 

The 5 Ps: Positive, Possible, People, Privilege, and Public    

Positive

a global-local language

A language that frames disabled people as a world majority to express inequality more accurately in terms of its global scale.

Possible 

A language of hope and ambiguity

Words that speak of the interest and contribution of Disabled people across sectors and in national debates.

People 

A language of a professional community

Words that acknowledge boundaries, in workplaces where human rights has meaning, putting Disabled people’s voices into conversation of organisational concern. 

Adding to monetary figures what people value and has worth.

Privilege

A language that enables well-being.

Words that peak of lives lived fully and a future to look forward to. Help that moves away when its no long wanted.

Public 

A shared language of stewardship 

Words that address group politics while acknowledging identity. 

A civic dialogue that puts Disabled people’s stories – leadership activity - within a legitimate storytelling.

Account-telling as craftivism and anti-ableist theory

As the visit shows, people demonstrated their skills of empowerment in conversations that toggled between languages. Their stories had a craftsmanship that appeared easy, but their accountability was implicit in the way they explained things, instinctively crafting their responses in a ways that spoke of understanding, empathy and love.

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. While people were sometimes fluent in their references to feminism, they had no language to 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.