“Nothing About Us Without Us” – The Power of Self-Advocacy through Powerful Storytelling

I began my short-lived career as an occupational therapist at Kalafong Hospital in a township just outside Pretoria in 1986, at the height of racial oppression in South Africa. It did not take me long to realise that what I had been taught at school and university, vis-à-vis the lived experiences of the majority of South Africans, did not add up. One of my patients advised me to contact Disabled People South Africa (DPSA) to gain insight into how best to support the empowerment process of persons with disabilities living in townships and villages. And so began my liberation through storytelling.

 

"Storytelling is critical. If you organise information in storytelling, children are more likely to learn it. And adults are, too."

One of the first written stories I was introduced to was Vic Finkelstein’s “To deny or not to deny disability“.  Published in 1975, Vic Finkelstein used storytelling as an accessible way to explain why he believed that it was not having an impairment that disabled him, but rather the attitudes, environment and institutional systems he had to negotiate.  In his story, those familiar with the social model of disability will recognise the thinking that shaped the shift in how we approach disability. Vic and his fellow activists in the London-based Union of the Physically Impaired Against Segregation (UPIAS) were strongly influenced by Vic’s experiences growing up in South Africa in the sixties and seventies.

As Amanda Gibberd points out in her Masters Thesis, the social model of disability shows significant influence from the Black Consciousness Movement, found in the writings of Steve Biko. Nelson Mandela further influenced Vic Finkelstein’s writing through, for example, his reference to the relationship between race and disability discrimination in the Rivonia Trial speech in 1964.

"In all the stories we write, we must always take care to consider what metaphors we are constructing, reinforcing, or challenging."

Therefore, it is no surprise that the slogan Nothing About Us Without Us was popularised by activists with disabilities in South Africa in the late eighties.

Persons with disabilities soon realised that their lives would not change unless they took charge of how their stories are told in print media, social media, television, radio, pictures, and research papers. Entire social movements were born in response to what disability rights activists termed ‘pity-party’ reporting and fundraising on the one side of the spectrum and ‘aspirational porn’ on the other.

How can Powerful Storytelling strengthen Disability-Inclusive Social Inclusion and Cohesion?

"Storytelling allows us to learn about others' experiences and see the world from someone else's eyes. Stories hold power to educate, advocate, and inspire."

We need new narratives that connect with people’s deepest motivations and promote more radical action. Stories engage people at every level – not just in their minds but in their emotions, values and imaginations, which are the drivers of real change. So if we want to transform society, we must learn to tell – and listen to – a new set of stories about the world we want to create.

The power and impact of self-advocacy by persons with disabilities by sharing their lived experiences and representing themselves through different storytelling mediums remain under-appreciated.

Several activists with disabilities have put pen to paper over the past few years. Others capture their stories through the lens of the camera. These stories provide us with a tapestry of their lived experiences. The insights provided by these stories can and should inform and guide those of us who are policy-makers and programme managers, as much as they inspire and encourage those who are discovering and evolving their #DisabilityMojo.

But do they? Do our stories engage people at every level – not just in their minds but in their emotions, values and imaginations? Are our stories told with heart, mind and soul, and with purpose, structure and a good dollop of science?

How can Powerful Storytelling strengthen Disability-Inclusive Social Inclusion and Cohesion?

“When it comes to inspiring people to embrace a vision or a change in behaviour, storytelling isn’t just better than the other tools, it’s the only thing that works.” (The World Bank’s Head of Talent Management, Steve Denning)

There is now a compelling body of evidence to support the idea that story-based media can shift social norms, values, and beliefs more effectively than traditional, fact-based messaging with relevant research and theoretical grounding. 

Researchers in Spain in 2006 discovered that many different centres in our brains light up when we are exposed to vivid stories.  If the scent of food is described, our smell centre activates.  We can have an emotional whole-brain experience with well-told stories, rather than the limited brain response when we are exposed to just facts.

From a sociological point of view, stories can establish or reinforce social norms that support the behaviour we would like to see.   If the characters embrace and include persons with disabilities, this can convey that this is just what people do, and therefore the listener/reader/viewer should too.  Stories help us coherently communicate the narrative for change, minimising people’s emotional response to resist change instinctively.  Our brains release oxytocin which makes audiences more compassionate when we listen to stories. 

In other words, even if our audience starts as critical, we can shift their mood into empathy, cooperation, and support of our message by impactful storytelling.

“If you give people facts without a story, they will explain it within their existing belief system. The best way to promote a new or different belief is not with facts, but with a story.”

Storytellers who deliver compelling stories make them catchy, impactful, authentic and simple. We can spark action and inspire people to join and trust us with a story, roping them in as allies and agents of change.

And whilst not everyone is born with natural charisma or has had a life-altering experience, we all have the power to craft and share an authentically crafted story about ourselves and our lives. We can then use our stories, in our own words, to effect the change we want to see in our communities.

“Disability is such a complex, nuanced, diverse thing to talk about and work with and it’s important that when advocacy opportunities arrive, there is space for all the voices. Words, and the way in which they are used, matter and have an impact.” (Chaeli Mycroft)

#YouAreEnough
#YourStoryIsEnough
#YourStoryIsYourCalling
#YourStoryGivesYouPermissionToBeYou

 

Resources

Episode 21 of the SABC2 disability magazine programme Activated focused on Changing the Disability Narrative through StorytellingTshepo Seboko (photographer), Simon Manda with the ThisAbility/24Media journalist students with disabilities and Shelley Barry (filmmaker) explore how persons with disabilities flip the script on disability by using storytelling as a tool for social change, to solicit understanding and action born from solidarity, rather than using it to drive pity, dependence and welfare.  A number of other great storytellers share their insights in other episodes of Activated, inclusive of Musa Zulu, Emilie Olifant, Nenio Mbazima, Chaeli Mycroft, William Rowland and many others.

We have created a dedicated #DisabilityMojo Stories Facebook page for authors, poets, photographers and filmmakers with disabilities in Africa who change the disability narrative by telling stories, whether in book form, blogs, video, film, photos, prose or poetry. 

We will be launching a #DisabilityMojo Powerful Storytelling Capacity Building Programme in 2022.  Follow me on Facebook and LinkedIn for news as it breaks!

If you want to gift yourself the opportunity to discover your #DisabilityMojo and continue your life journey with a positive and joyful outlook, book a 45 min, free no-obligation #DisabilityMojo Discovery Session to see whether coaching is the tool you need here 

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lIDIA pRETORIUS

lIDIA pRETORIUS

Your #DisabilityMojo Empowerment Coach

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My private (individual) and group coaching programmes support persons with disabilities to use the gifts their disabilities give them to remove roadblocks and free them to live a purposeful and joyful life.

The programmes are specifically developed for persons with disabilities who know they deserve a life of fulfilment and purpose, aspire for more, and help them (re)discover their strengths, passions and aspirations to chart their paths to a joyful and purposeful life by facing and embracing both their disability demons and gifts.

If you want to gift yourself the opportunity to discover your #DisabilityMojo and continue your life journey with a positive and joyful outlook, book a 45 min, free no-obligation #DisabilityMojo Discovery Session here to see whether coaching is the tool you need.

 

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