Valuable Conversations or Missed Opportunities for Authentic Inclusion?

Content Warning: This article discusses language that has historically and currently been associated with disability, including terms that some readers may find uncomfortable or triggering. 

Taking a Moment to Reflect 

Tuesday, March 25th, marked Cerebral Palsy Awareness Day in the UK. Rather than posting immediately, I chose to pause and reflect deeply. 

Taking a step back felt necessary, not only to recharge but also to thoughtfully consider my relationship with awareness days and their true impact on inclusion. Awareness days often evoke complex emotions, especially now, as my professional role deeply involves accessibility and inclusive practices. 

They prompt me to ask: Do these days genuinely contribute to meaningful inclusion?

Or might they unintentionally reinforce outdated narratives around disability? 

Growing Up with Cerebral Palsy in the Mid-1990s 

Rox, 16 years old, wearing a flowery strapless dress at prom, using a walker.

I was born prematurely in the mid-1990s and diagnosed with cerebral palsy spastic diplegia at the end of 1992. At that time, the Disability Discrimination Act (1995) had not yet started shaping vital conversations about disability rights and equality. 

Campaigns such as "Piss on Pity" encouraged a shift from charity-driven perceptions towards more ‘empowered’ views. Yet, growing up, I received mixed messages even within my family. Regularly hearing that I wasn't "really disabled" because I could achieve certain milestones created confusion. 

Reflecting now, I understand this came partly from genuine support but also from fear and a lack of resources. Without social media or extensive support networks, charities often provided the main guidance for families like mine. 

I distinctly remember a VHS tape we had at home, covered in bright blue, titled something along the lines of "Raising a Spastic Child." While well-meaning, resources like these inadvertently perpetuated harmful language and perceptions around disability. 

Ableism: Recognising Internal and External Barriers 

Professionally, my work centres around identifying and addressing disabling barriers, including attitudinal ones often leading to the term ableism. Ableism manifests in two significant ways: 

Internalised Ableism 

This happens when disabled people internalise society’s negative attitudes, leading to feelings of inadequacy and self-doubt. 

Externalised Ableism 

These are societal attitudes, policies, and physical barriers that actively discriminate against disabled people,like inaccessible workplaces or exclusionary practices. 

The Domino Effect of Inclusion 

I see barriers as a line of dominoes, with attitudes at the very front. If we challenge negative attitudes first, we trigger a powerful chain reaction, breaking down other barriers that follow. Real inclusion begins by changing mindsets.

Navigating the Complexities of Language 

Language holds enormous power. 

Take the term "spastic," medically accurate for describing muscle stiffness in cerebral palsy. Society, however, transformed this into a derogatory insult, underscoring the importance of mindful and respectful communication. 

This raises challenging questions: 

Can we reclaim words historically misused, as we have begun to with "disabled"? Or do some terms carry too deep a legacy of hurt? 

Additionally, I still grapple with experiences of "inspiration porn," the tendency to excessively praise disabled individuals for performing everyday tasks. Despite my work delivering impactful training on the social model of disability, I often question if I'm still perceived primarily through a lens of inspiration. This ongoing challenge highlights how internalised ableism and trauma can persist over time. 

Intersectionality and Embracing Complexity 

Awareness days sometimes suggest disabled people are a single-dimensional group, defined only by disability. Understanding intersectionality: how different identities like race, gender, class, and disability interact has significantly shaped my journey. 

Understanding intersectionality and its theory supports me in confronting barriers such as imposter syndrome by reinforcing my multifaceted identity.

I am disabled, but I am also more than just disabled. 

Charities: Shifting Narratives Towards Enablement 

Charities themselves aren't inherently negative. Many provide vital support, enabling people to live fulfilling lives. Yet historically, viewing disability solely through a charitable lens has reinforced harmful stereotypes. 

Organisations like Scope have recognised this, consciously moving from pity-based narratives towards genuine enablement and equality through equity.

The Global Narrative and Feeling Safe in Awareness 

Global conversations and media portrayals significantly shape how safe individuals feel participating openly in awareness days. Societal perceptions influence our willingness and comfort in engaging authentically. 

Reflecting on Responsibility and Inclusion 

Working in inclusion professionally has made me cautious about awareness days. There's always a risk of reinforcing the medical model, which focuses on "fixing" disabled people rather than dismantling societal barriers. 

Perhaps multiple truths coexist

Awareness days can spark meaningful discussions. These conversations must centre around societal change, not outdated perceptions. Yet I also question whether it's solely my role, as someone with lived experience, to determine the value or impact of awareness days.

Shouldn't meaningful change also rely significantly on engagement from those without lived experiences, who hold decision-making power within society? 

I must acknowledge my understanding has evolved over many years, through personal and professional experience. Not everyone has had this journey, underscoring the importance of continued, patient education and dialogue. 

However, I want to support people throughout this journey and meet you where you are currently as part of my role.

Questions for Consideration 

Ultimately, who decides the purpose and direction of awareness days? 

Should lived experience exclusively guide these conversations, or is it essential that those without personal experience also reflect, learn, and actively participate? 

For me I feel anyone has a place and part in these days and conversations however it is about feeling confident about what that looks like and what your role is.

This has left me wondering should my question actually be Awareness Day Valuable Conversations or Missed Opportunities for Authentic Inclusion. 

And instead, how can we foster awareness days that lead to lasting societal changes benefiting everyone?

I know one thing this question should remind central to ongoing discussions about authentic inclusion.

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