Why would I lie?

 Let me tell you, there's a real buzz of excitement leading up to giving a presentation. An energy comes from being wanted and valued. It's a thrill, but also nerve-wracking - motivating and exhausting in equal measure. I'm no longer surprised when the neat linear story in my head, backed up with 34 slides, rarely matches the beautiful messiness of the actual conversation in the room. Years of delivering keynotes don't quite prepare you for the joyful chaos of building understanding together in that space.

I always start with a trigger warning, not because it's trendy, but because a staggering 9 out of 10 disabled people report experiencing hate crimes every year. So we can assume that trauma and violence have likely touched many lives in most rooms. Be aware 1 in 10 individuals can potentially identify as disabled. I explain that while it's my personal story, we're engaging in professional dialogue, framed by evidence and theory from fields like disability studies, well-being and sustainability.

I'm sharing decades of hard-won professional wisdom - over 30 years of conversation and learning. Just like talks on critical race or gender, discussions of critical disability require specialist expertise that's been built over time. You wouldn't stop random people on the street to ask their thoughts on racism or sexism, as that could be traumatizing.

The idea of "othering" quickly emerges as an emotional tension point. Talking about disability gets uncomfortable because the "them" and "us" continuum becomes more visible and apparent. I get tongue-tied too, stumbling over whether to identify as a disabled or as an equal scholar in a discipline I've steeped myself in for decades - leadership. I prefer letting people self-identify as disabled, rather than make assumptions that could be wrong.

Clearly, there's more to this than what's "wrong" with someone...what about society's role? Where exactly is the difference between disability, mobility issues, impairments, using glasses, having dyslexia? The core question is, do you identify as disabled? Do you face ableism, disadvantage and marginalisation? With 1 in 10 potentially part of this group, that's a huge population.

The truth is, terminology (or lack thereof) hinders having a clear, unified definition. The single word "disability" encompasses so many notions that it's unsurprising we struggle to find accuracy, let alone achieve alignment or agreement. Words fail at capturing the nuances of labels, diagnoses, political identities, differences, impairments, communities, and more. "Disability" has been used haphazardly in every which way. 

To define ableism, I describe the violent ideas and assumptions imposed on the disabled population. I don't get granular talking about individuals because we all act differently and have our personal preferences. This way, I don't have to point fingers at individuals or groups - people can identify however they wish. It's not always a straightforward reflection. Many will say they've never encountered sexism, for instance, while others say Islamophobia greets them the moment they step out their door.

It's surprising how many of us can completely ignore the subject of disability, while others see it as a core aspect of human diversity. And some will recoil in horror or embarrassment...how dare you bring the very idea into the room! It's difficult to openly identify, because you risk being instantly dismissed on appearance. 

There's evident misrepresentation across the textual world, where a noticeable silencing tells us that disabled voices are deemed untrustworthy. Disabled people rarely get recognised as authors or credible voices in mainstream debates that deeply impact their lives. They're denied the authority of being creators and holders of knowledge in documents that, instead, reinforce their marginalization.

Why would I lie about any of this?  

This insidious silence is hard to describe but essential for understanding how disabled authors get framed in text. There's selective editing of first-hand experiences, presenting a narrowly medicalized view of the person as the root "problem" rather than systemic forces. It denies the systemic, institutional, and social violence that #MeToo and #BLM have shed light on. The privileged, paid pen remains firmly in the grasp of the white professional elite, under an omnipresent cis/white/elitist gaze. For those battling racism, classism, sexism, homophobia, and other prejudices, resistance is far harder and cumulative!

The 9 protected characteristics should afford equal standing, but the cumulative impact gets rarely articulated in guidelines or accountability measures. If disability even makes reference lists, details get shed as word counts constrict, erasing divergent voices. Disability might get a cursory mention in the intro, a brief nod in the literature review, only to vanish without a trace in discussions and reference sections. 

Of course, some disabled writers may not openly identify for fear of having their work judged more harshly. Many write from personal experience rather than overt activism or accountability to a discipline. Having "disability" in a title rarely translates to existing scholarhip on the topic being featured substantively. Assumptions and biases are glaringly obvious in the individualising, personalising and suggesting there's something unique about each condition or person's circumstances. It writes away dimensions of institutional discrimination and societal disadvantage as forces to be grappled with.

The impact of this silencing is apparent in how assumptions morph into myths that reinforce stereotypes springing from ignorance rather than lived experience or research evidence. It fuels beliefs that only a few need real consideration, therefore framing disability as the "problem" of the unlucky or undeserving. The omission from disciplinary and professional texts suggests it's a granular issue best forgotten, or a "cost" issue for some other department's budget. The idea persists that there's a line separating who can and cannot be integrated into existing systems, with rules keeping some watching from the sidelines and others locked out completely. Finally, there's an insidious dehumanization where disabled lives get treated as public property - from research to the public pool, their experiences get used, revised or demanded without consent or privacy typically afforded others.

This accountability void - this legitimacy gap I'm articulating - denotes a breakdown of trust. Reputations reveal no substantive acknowledgement of the disability community, disability equality, or the interests of the disability rights movement and advocacy groups. Legitimacy theory centers the ability to respond substantively to civil society groups in organisational reporting. By that measure, the disability community's core interests remain glaringly omitted from society's storytelling and truth-recording.

As Oswick et al. put it, for a radical theoretical lens to travel beyond its initial domain and get legitimately adopted elsewhere, it needs repositioning and repackaging to circulate within new communities. An anti-ableist theory aiming for broad applicability, like the Social Model, must undertake "a process of repackaging, refining, and repositioning a discourse (or text) that circulates in a particular community for consumption within another community."

From the initial sadness at birth announcements, to stigmatizing testing practices in schools, workplace barriers and denigration, being victimized by the justice system, and denied entry to housing, transport, and leisure - the human rights agenda as applied to disabled people gets reduced to "care and cure" oversimplifications that massively understate the societal cost. And that's before even quantifying the emotional burden imposed on so many!

Trust me, just putting in "any effort" isn't enough. The imperative driving our practices must involve the right effort with clear, proactive intentionality. Sometimes good intentions alone don't translate to real progress. Addressing ableism isn't something that will happen by sheer accident while chasing efficiencies - it means recognizing an agenda beyond solely financial value. Treating human rights as divisible or conditional is nonsensical. Cutting corners on ethics and equity will never create more equitable cultures.

Dismantling ableism requires a true paradigm shift, with different actions undertaken at the individual, team, and organizational levels. It's like patting your head while rubbing your belly - multiple coordinated movements are needed. Simply put, our current practices often end up compounding the very structural discrimination and inequalities we're supposed to be remedying. We have to change course entirely.

 

 

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