The question that brought me to my PhD work was born out of a professional hunch. Having worked in countless disability organisations, not all Disabled People’s Organisations, but across sectors and institutions providing services to disabled people, I was always puzzled by the lack of words to articulate the interests of the disabled population. Also, given the growth of interests in protected characteristics under equality legislation, I often asked myself why the interests of disabled people were so neglected. In Scotland more specifically, where human rights seem to be very much on the agenda, the vocabulary used to talk about disability is blunt, clunky and confusing. As a disabled person the issue may seem less pronounced than it was when I put my working hat on. Not every disabled person is required to be well versed in disability politics, but as an Disability Equality and Equality & Diversity practitioner the absence of reference to a movement or field of study highlights a significant absence in the field of human rights, and therefore in that of accounting for society and the environment. In common terms, at any conference the disability stuff is often an afterthought, an additional paper or ignored altogether. Even at Equality & Diversity events you can spot the disability workshop as it has the fewest participants.
Where does this journey begin, if not long before I took up the intention to travel. I have been around a block or two in my time. More specifically as an academic, the road has been uneven, often challenging and barred at times. But having jumped the Masters hurdle with a modicum of grace, I approached the ‘thesis’ opportunity with more excitement than trepidation... [“you fool!” Indeed]. I was acutely aware of being in a privileged position and set off with joyful steps...
In terms of scene setting, I’d worked as a facilitator, speaker and occasional writer on equality, leadership and social justice for many years. So I had already built a little knowledge, I had spoken with, and read the thinking of many knowers. A lot of my understanding of disability came from personal experience, but increasingly my knowledge was built on academic theory, some based on research evidence, and a wealth of professional wisdom gleaned from stories from shared through a global network. So I’d come laden, if shambolic and chaotic in appearance, my luggage was packed... I thought I was prepared. I wasn’t. This particular leg in an otherwise rather haphazard and unguided journey was a very different trip indeed! I soon realised it would mean jettisoning the stuff that weighed me down, however precious, and collecting far more than I had ever anticipated. I literally had to unpack the gathered clutter, sort it, and reassemble it in a more structured way.
What did emerge quite quickly was a sense of the scale of the ‘thing’ I was exploring. Although I knew a great deal of intertwined stuff relating to disability, I struggled to spell out why it was important to accounting for society and the environment specifically- because I felt it was! Working on a hunch I set out to find the research relating to disabled people’s lives from an academic perspective. To say sparse would underplay the emptiness of the void. I had expected little, but nothing was far worse, because without any evidence there is no story at all. Without a story, all possible future storytelling is devoid of grounding - the authenticity that makes it authoritative. Research did evidence what disabled people were thought to lack. However, as I was going to have to labour over, finding a voice that represents a population requires far more than a personal voice - or even many. Research evidence, personal experience, and professional wisdom are required in equitable measures, for their unique contribution to the validity of evidence based knowledge. (That’s epistemological justice to the boffin). The challenge is to then use this mix as an analysis tool.
To articulate an unique sensitivity, I set out to define its different elements, with the aim to tell a history of disabled people’s fight for rights. More specifically this dis-story (see what I did there) would tell the struggle for a more egalitarian participation in world affairs. Sadly, this story, told here by me - an unreliable author - explores the many interests often hidden from view, those in the void. For those familiar with disabled people, their families and community the story is old news. However, I am constantly surprised by those totally unaware of the extensive narrative, the troubling and courageous story of so many disabled storytellers.
The authority with which I wanted to hold myself accountable, was neither personal, singular or without professionalism. I wanted to narrate, from a privileged position admittedly, the shared story of many authors, with full acknowledgement of an already long path trodden by travellers with liberating ideas, common interests and a defined purpose. So once I had worked through piles of academic literature, sometimes hundreds of abstracts a week, I sought alternative sources. Because out of the hundreds of academic papers too few looked into the void. I did find a story in a variety of other mediums, books, blogs, conference presentations and videos, these helped to complement or confound the academic narrative I had found lacking in authority. I already knew how singular my own understanding was, unsurprisingly given my individual path. But lots of things supplemented my own truth, many giving me a sense of perspective on events I felt were only true to me. Therefore, overall I was able to paint the character the injustice levelled at disabled people in our society, the impact of the orthotoxic environment we are all steeped in (that’s orthodox and toxic btw). Orthotoxicity may best be described as a discord, a lack of congruence, with a growing individualist and consumerist view of the good of growth. An unsustainable development, giving rise to a paradoxically hostile world we seem to crave increasingly - without questioning why. A world in which most of us are not sensitive to its injustice, and can therefore ignore its harm without effort.
Unsustainable development, based on efficiency and devoid of sensitivity to those in recipients in dire circumstances, unfortunately gives rise to policy based on assumptions and bias. Responding to the stereotypes of disabled people being deficient and needy, institutionalisation is cheaper solution to a problem, and ableist response in a materialistic society unwilling to consider more effective approaches to inclusion.
I was particularly struck by evidence of the following:
- The numbers of disabled people are huge, yet their experience is oddly viewed as insignificant in community life in general;
- Globally, economic, cultural and political power influences local outcomes, but all too often it is not perceived as harmful to those suffering or flourishing;
- The power of the expert, carried in the neutrality of technical mindsets, still trumps the robust evidence of it inflicting harm and misery;
- Growth in market measures still carries a positive and a numeric value even where is creates inequality and misery - organisational rules do not shift for the sake of justice.
- Privilege is poorly articulated, in that unwittingly the hum of the systemic machine, societal chatter still imposes harm on those vulnerable in the face of a silenced unrest, public outrage still focuses on individual deficit, or worse disagreeable reaction by unbearable circumstances.
My research took me to a place where orthotoxic assumption is challenged. I was already working with a space I viewed as deviant organisation. Here accountability was expressed in terms of disabled people’s leadership, money was owned through individual budgets, and a human rights framework supported independence and encouraged liberation from the harm of institutionalisation. The interests of a population formerly abused by systemic power was central to business, and where freedom, choice and control was respected. As Alice, I stepped through a looking-glass, exposed to a world that was upside down and back to front. One that I perceives as atypically comfortable, kind and unusually safe. The culture, or web of understanding, had an unique character that was rich and generous, a pleasure to explore. Although, whilst appearing simple, complex notions such as human rights and Person Centred Planing, underpinned the most simple action. As the reflection on the ethnographic text the immersion supplied showed, simplicity is far from easy when particularly when challenges layers of engrained attitude driven by the orthotoxic morass described above.
More in part 2!
A suivre!
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