Framing the narrative

Whose focus is it anyway!?

I'm always amazed at how many people want to tell my story their way. For example, rephrasing my challenges as a right of passage, or my achievements as proof of privilege. Acknowledging privilege and disadvantage more explicitly does more than show respect, it avoids framing individuals as sinners or saints. Finding joy in the lives of those who face the weight of society’s misrepresentation is not the way to go!? I do not want to be framed as inspirational but equally hard-working.

In reflecting on the power of language and the narratives that shape our understanding of disability, it's crucial to acknowledge the voices of those living with the experience, working in the area and knowledgeable about the subject. For example, I have had experiences as a woman, learned understanding as a feminist, and gained wisdom as a student of gender studies. Similarly, as a disabled person, a disability equality trainer and a student of Disability Studies, I frame my experience very differently from those who want an uplifting narrative.

Today I'm compelled to offer a complementary perspective to the inspiring over adversity trope. Because I feel it amplifies the wrong perspective, by adding extra pressure on disabled people to conform rather than on allies to engage in shifting conversations around disability.

As survivors of a system that often fails to listen or acknowledge our experiences, we're left to contemplate the untold stories and the pain that could have been avoided with genuine recognition. For too long, disabled individuals have been marginalised, and labelled as 'faulty' within a broader narrative that perpetuates harmful stereotypes and denies their truth.

Telling the story and framing the narrative are two different things. But both present an opportunity to challenge entrenched biases and reimagine inclusive practices, particularly within education. I'm keenly aware of the need for better-defined language to dismantle the culture of silence that stifles our community.

Echoing many sentiments, the story of many dis people serves as a poignant reminder of the urgency to embrace diversity and common humanity. Indeed, we're long overdue for a seismic shift in the narratives that perpetuate injustice in our society. By proposing alternative stories that honour the lived experiences of individuals like Ella, we can confront the myths and distortions that hinder progress.

We must change the conversations surrounding those marginalised by language, both in organisational settings and broader society. It's time to challenge the notion that diversity is a problem to be solved, rather than a strength to be celebrated. However, we need to do it mindfully, by understanding what disenfranchised groups have to say, not by simply flipping into positive spin.

While individual conversations undoubtedly hold value, true transformation requires a collective effort to dismantle systemic barriers at every level. Civil rights campaigners have equipped us with the vocabulary to articulate the forces that silence and marginalize individuals. For many it's clear that their experience within our institutions and communities is contingent on likeability or positive regard. Therefore they may not c,thrive if they are always expected to be ‘happy’ and therefore deemed 'different.'

In Survival, my book, I write:

The onslaught of Positive Psychology books and the proliferation of inspire-porn only reinforced the ‘your choice to fail’ message. Because it's not only the only negative ideas that pack a punch. When people assume you're a superhero – inspirational, courageous, and all that jazz – it's not all sunshine and rainbows. Positive vibes are cool, but expecting someone to be a ray of sunshine, overcoming hate, violence, and barriers – is not cool. It's downright cruel to expect people to react positively to negative attitudes and circumstances without acknowledging the bigger issues. "She's so brave; I don't need to lift a finger" is part of the problem!  Coined by Stella Young, an Australian activist and comedian, the term "inspiro-porn" describes this phenomenon of positive stereotyping (Young, 2014). It's the idea that if a disabled person achieves anything, no matter how mundane or insignificant, they're immediately labelled as inspiring. Take today’s headline, for example, a father carrying his son up a flight of stairs at a station because the lift was out of order. The media loves to spin these stories as "inspiring." But in reality, it's a subtle form of prejudice. Inspiro-porn shifts the responsibility onto the disabled individual or their family to overcome discrimination and inequality. The more triumphant the individual, the less people who are privileged not to face discrimination can avoid addressing the systemic issues in our environment, society, and culture. It's a way of shifting the blame onto those who don't fit the narrative of overcoming unfairness and inequality.

 

We must confront ableism head-on, using nuanced language to expose the prejudice and inequality embedded in our society. As a disabled person, I reject the notion of being 'less broken' and instead I want to be invited demand respect and allyship in the fight against discrimination. It's time to redefine our narratives and oppose negative biases with clarity and conviction.

My journey as an activist began with a lack of language to articulate the trauma of my experiences. Silenced and dismissed, I grappled with the aftermath of violence masked as schooling. But I refuse to remain silent any longer. It's time to challenge the sanitization of society's storytelling and confront the injustices that have plagued our community for far too long.

In conclusion, let us commit to changing the conversations surrounding disability, armed with a richer vocabulary and a steadfast determination to challenge ableism at every turn. Together, we can create a more inclusive and equitable future for all.

Available in September