The arched window: a blended perspective

Please do not take this too seriously, it’s a whimsical footnote… but it got serious despite my best efforts, sorry!

 

The children’s TV programme Playschool was a huge treat when I was a young. We lived in France, so the opportunity to watch it only came around a few weeks every  year. At my grandmother’s I would sit in front of her TV and watch in awed silence. The square, round and arched windows were the highlight of the programme. I loved the short films, and guessing which window would be picked was the best bit of all. As a metaphor, not an analogy, the framing of the windows offers a perspective on storytelling in the following.

 

My thesis dealt with the blending of theory, among other things… That’s the notion that theories in some subjects are borrowed or blended, to be more or less domesticated by other disciplines. Some disciplines it seems adopt theories more readily than others. Some blunt theory by eroding their more challenging ideas, but keeping the ideas that best fit their own existing ones.  So it is with this in mind that I came to reflect on Playschool in this a feminist critique of the social model. I drew on the writings Oliver (1990) and hooks (1989), I hope to honour their storytelling in this piece. Importantly where I fail, it’s my bad!!!

 

The square window 

Imagine the square window as a frame through which society views matters relating to disability. Looking at the paper trail, disability has been the topic of accounts held in journals told largely by clinical professionals and/or academic writers. Their storytelling often speaks to an individualised and medicalised view of the problems disabled people have. No doubt framed by more widely by ideas of war, industrialisation and eugenics. They have have been tales told by the ‘expert’, in a scientific language, assumed class dominance, referring to the rectitude of economic development, the ghost of the industrial revolution, a barely vailed belief in progress and growth as a good for society. As this trail suggests, many research projects sought to answer questions that addressed personal issues to help individuals fit into society. Alongside this effort, communities saw the rise of poorhouses, workhouses and asylums, erected to warehouse those deemed deserving of charity - while not encouraging those viewed as undeserving.  Pay attention to the framing, which helped silence the experience of disabled people in favour of explaining the price of their lives as a cost to society. Rarely even overtly framed as consumers, certainly not as citizens, disabled people were painted as passive recipients. Their voices thus erased from society by a growing industry, yet turned into commodities in a disability industry turning over thousands every year. An exploitation hidden from the frame, by a narrative of charitable benevolence silencing individuals, families and communities. A huge human cost. For me the medical model, is a shorthand, a way of framing clinical ideas have been domesticated by humanities, with a language that sounds authoritative but has few words for what matters to disabled individuals. In my experience evident in the words of those who feel entitled to tell me how I should adapt my story, people who seem oblivious to the frame, and therefore have no understanding of what they are asking me to dismiss. 

 

The round window

The round window, I think of as framing the voices of disabled people. Importantly standing against the medical model. More so against how medical thought has been adopted by disciplines, than whether it is okay in its own place, in a framing that can impose its binary – dividing opinion in far more complex debates. Its shorthand raising the question of the disabled population’s human rights in terms of  “what’s wrong with society”.  For me, and the many disabled people I’ve spoken to, it reminds us to look beyond each individual, to the organisational, institutional and societal structures that perpetuate the disadvantage imposed on the disabled population. It allows us to ask how change could enable greater participation and citizenship.   Looking through the round window, the storytelling starts with the evidence held in disabled people’s storytelling – their experience. These tales often speak of testimonial courage, emotional labour, and the personal cost of boundary negotiation. Accounts that I read as upholding the values of coproduction, as they affirm a wide range of shared interests, from a diverse group,  often engaged together as a community of learning, activism and/or quiet resistance. The round window frames a storytelling that acknowledges a fight against segregation, institutionalisation and marginalisation. Fights for rights with roots in the Independent Living movement, rooted in the interests of the D/deaf and Disabled people’s movement. A demand from a group within the civil rights movement for society to act with greater legitimacy to enable participation, addressing the barriers to community life and inequality globally. More saliently asking questions that failed to be addressed by those gazing through the square window, through the round window is a world vision more congruent with human rights, equality and justice.

 

As a shorthand, my reading of recent disability literature, encourages us not to pick between windows, but to seek to see beyond each one. This, an interpretation of history, was prompted by a textual analysis that suggested that the past framed square, is now facing push back. However, this pushback is not round either, I can’t unpick it fully here, but counter arguments are often framed through existing windows… responding in an academic, clinical, scientific style that in itself presents the wrong framing. Put another way, what may make you better, rarely makes you happy and is unlikely to help prevent illness. Well-being requires a different understanding than cure. 

 

Furthermore, on the street the social model has currency. Outside the university, and its growing consumerist culture, the square frame has changed the lives of many. I’d wager the simplicity and accessibility of the social model has altered the way many disabled people see ourselves. For me it was oral history, not books initially, that provided a way into the ‘us’ of D/deaf and Disabled People’s Organisations storytelling. It wasn’t grand theory, but a way of making sense of being disabled by society and not having to change. And while we can critique the models in many ways, they serve to helps us interrogate many other perspectives we’ve come to accept – sometimes without question - our societal conversations. However, I think it helps when  both frames are considered for their alternative views. As they help us consider many layers of culture, the institutional discrimination and globe-local injustice, the domestication of a voice that silences the disabled population in conversation about rights. 

 

The arched window

Hooks of feminism: “Practically, it is a definition which implies that all sexist thinking and action is the problem, whether those who perpetuate it are female or male, child or adult. It is also broad enough to include an understanding of systemic institutionalized sexism.” (1989) 

 

So the arched window!?! I hear you cry. Can we acknowledge and enable a different view? I’m not suggesting I have an answer, but an have an urge to encourage a blending of disciplines in a more equitable way. Without borrowing or blunting, but honouring the sprit of the more jagged edges?  As Hargraves encourages with regard to sustainability, leadership is a diet not a menu. We cannot pick and choose which tales we accept, or those we reject, according to how they best fit the windows we are most comfortable with. Ideology is at work, we need to begin by questioning the shape of our own frames.

 If dated, the round frame has power outside the university, in its enduring contribution to the lives of many disabled individuals and the allies at their side. It enabled a view that was ground-breaking against the institutionalisation of the day. As such, it is far more understandable as a response to the structural harm of its time. To deny its contribution speaks more to criticism, than the possibility of further critical interpretation. As bell hooks said: “To understand feminism it implies one has to necessarily understand sexism”.   The social model gave me a way to understand ableism, in turn this led me to understand disablement, much later disabled people as storytellers and the frame of their storytelling.  

 

The way I read it, having analysed a small library, extending the story, including the challenging ideas, while striving to give breadth and nuances seem far more respectful when acknowledging past voices – as equal partners in time. Any view on it’s own will most probably fail to illuminate the tightropes of privilege, oppression and societal inequality. As bell hooks encourages us to consider, keeping knowledge within academic walls encourages an acceptance of the ivory towers and its window framing, without the disruption of others. Elitism, I my experience certainly, is a privilege that doesn’t do much to counter an internalised oppression driven by the ableism around me, one also toxic to many. It’s a response to silencing I seek to assuage by more conscientious reflection. By holding an arched window up at our societal conversations maybe we can foreground the round more effectively?  Why? Because changing the conversation without including the people most affected by shared decisions will only serve to keep ‘inclusion’ as conditional. If the frames are ignored it’s impossible to work as allies as our leadership activity will be devoid of accountability, due a gap in legitimacy, where disabled people’s voices need to guide our strategic thinking. To quote bell hooks "Simply put, feminism is a movement to end sexism, sexist exploitation, and oppression"; then similarly addressing ableism is a movement to end harm inflicted on disabled people and the disablism and disablist silencing that goes on around us in an ableism repeated with resulting silencing of the disabled population – if not individuals.

 

Go watch playschool with that in mind, I dare you!!

 

Bibliography

Barnes. (1991). Discrimination: disabled people and the media. . Contact, 45-48.

Hargeaves, A. (2005). Sustainable Leadership. San fransiso: Jossey Bass.

Helgesen, S. (2005). The Web of Inclusion. Washington: Beard Books.

Hochschild, A. (2012). The Managed Heart: Commercialization of Human Feeling. Berkeley: University of California Press.

Holtgraves, T. (2002). Language as Social Action, Social Psychology and Language use. New Jersey: Erlbaum Associates.

hooks, b. (1989). Talking back: Thinking feminist, thinking black. Boston MA: South End Press.

Klein, N. (2014). This Changes Everything: Capitalism vs. the Climate . London: Penguin.

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

Oliver, M. (1990). The Politics of Disablement: A Sociological Approach (Critical Texts in Social Work and the Welfare State). London: Palgrave Macmillan.

Oliver, M. (2016). Rewriting history: the case of the Disability Discrimination Act 1995. Disability & Society, 31(7), 966-968.

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

 

 

Words on a journey

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

Sustainable Development?

 

 

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

 

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

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

 

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

 

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

 

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

Image with thanks to @_louisreed ❤️

 

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

 

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

 

 

Improving the world a word at a time

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

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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