Literature, storytelling and patterns in penship

A few notes on my research work: 

There is a text of 79.456 words, but this is an effort to share the what, how and why of my Ph.D on human rights, accountability and legitimacy.

If you invited ten feminists into a room and asked them to define feminism you’d probably get lots of conversation and an argument or two. Eventually I would expect ten different, very lengthy and nuanced definitions.  This said, I’m guessing you could walk into any office, pub, church or toddler group and bellow ‘feminism’, and most people would say something. Admittedly, the toddlers would speak with more confidence about what is fair ... and what isn’t. Not everyone will speak of feminism in the same way, or with the same words, but many will recognise women’s voices as fairly critical in a conversation about the Human Rights of women. The voice of women is one way of describing feminism, the common interests they hold within a world-wide conversation. Books on feminism, written by women, define it as at a voice that has distinctive characteristics, a recognisable narrative reflecting their interests, their wisdom and their  knowledge. Personally, I do like Bissett’s assertion on the need for men to listen to that voice, encouraging men to speak as feminists, with women as the trustworthy authors with authority. 

 I went looking for an equivalent voice for Disabled people. I searched, high and low, for texts that offered a view of the world in words that spoke of the disabled population’s interests. Sadly my initial search was disappointing. Because, within academic texts, not disability studies, but across many disciplines, texts authored by Disabled authors were sparse even 2 decades ago. I hadn’t found a gap so much as a abyss. Daunted!! I started looking elsewhere... I found 1 book, Out of Sight (Humphries & Gordon, 1992), which claimed to be the first to tell of Disabled people’s lives in their own words. A narrative that differed significantly to those found in research texts of the period. I’d say that’s a fairly recent account.

I  looked to the disabled population for authors, not simply writers, but storytellers with a distinctive experience, knowledge and wisdom. A gave the narrative I looked for a name: DIStory. A word play on SHEstory, the feminist alternative to HIStory. I hunted through texts for an ‘Activist’ voice, authors who craft their tales to change the way Disabled people are represented to the world. Some offering new ways of understanding the experience of individuals, others by telling of group culture, ideas and interest, and yet more putting pen to matters of inequality in society. Thankfully, I had the Disabled people’s movement to turn to as a group representing disabled people’s rights. I’ll be honest, I hadn’t anticipated the scale of the job, and there were layers upon layers to piece together. The pattern is simpler to outline, the way disabled people’s words are often ignored, or misrepresented, in broader debates. I hadn’t expected clear and verbatim reference, but the distortion or full rejection soon became evident. 

Disabled people are often absent in many stories. Even in Equality & Diversity literature, where the strands are listed, disability often gets forgotten. With reference to Human Rights, for example, using the Global Development Goals as a focus, I soon identified that global, institutional, sector and organisational storytelling is shaped in ways that perpetuates stereotypes – not personal experience, practitioner wisdom or research evidence. More widely stories have been retold in ways that have a polarised view of good and bad individuals at their heart. In different layers this skewing takes on other distinctive shapes. Many conversations, for example, ignore the link between consumption and world inequality, the way we educate professionals ignores disabled people’s contribution, the discussions we have about equity rarely address equity an imperative, and in groups people rarely look to the reasons why disabled people testimony is rejected.

Too wordy? Soz!  I’ll share more on these themes in weeks to come. In the meantime lack of trust really stood out for me as a thread that ran through the distortions. Every story reduced disability to an individual problem, very few texts spoke of the impact a characteristic voice could add insight from alternative or unique perspectives to conversations about sustainability in business, education or wellbeing texts. There are still no words to articulate much of character of the myths, the injustice, imposed on disabled people. In addition, a more widespread belief in individualism reinforces the idea that disabled people have a choice in world matters, because happiness is simply a matter of being plucky, smiley and chirpy.  If we do not speak of these things, how can we see the tale from the lie, and work to hear what matters to us all??!!

When I spoke to professionals about a more subtle vocabulary for disability, to include impairment, disablism or ableism they looked at me blankly. I remember one person’s jaw hanging loose as they pondered... I watched as the penny dropped... no, there wasn’t an equivalent to misogyny that they knew of... 

Photos by @Bantersnaps and @gui.bolduc  on Unsplash

more soon