How Often Do You Have Sex?

 

Now that I have your attention, let’s talk about narratives: How We Tell Tales

 

Think about narratives—the different types of conversations we have every day. Many of us change tone and wording without thinking. The way we speak changes depending on where we are and who we’re speaking to. You wouldn’t talk to your boss the way you talk to your best friend. You wouldn’t approach a stranger and immediately ask them about their intimate life. And yet, when it comes to disabled people, this social toggling or its sensitivity seems to disappear.

 If asked how often I have sex, I would expect the very close friend to have at least filled my glass a few times!

Public Narratives

 

Pick up a newspaper, and you will notice how journalists shape narratives to guide the reader’s focus. Consider a headline: George, 56, fell in the street because of a pothole. Why mention his age? Unless he is 5¾, George will be unlikely to want you to know his birthdate! Age is personal. A journalist will mention it because it jars—the wrong toggle invites a particular reaction. We identify with George if we're around his age; perhaps we’ll feel sympathy, concern, or a reminder of our own vulnerabilities. Journalism is about framing, about making certain details stand out while others fade into the background.

 

Similarly, if a journalist writes about sex in a professional context—say, a dentist having a relationship with a client—it’s because they hope their readers find it surprising. The narrative assumes that the mix of workplace culture and intimacy is unusual. In this case, there’s nothing to report. What dentists do in private is personal, as long as everyone consents. (Jill and John got married and lived happily ever after 🙂)

 

 

Misplaced Focus on Medical Matters

 

Getting the focus wrong—the toggling—often happens, sometimes unwittingly, when disability is written about. While many disabled people see themselves as human, the narratives about them often articulate a faulty, medicalised view. Reading about disability in mainstream literature, you’d be forgiven for thinking that most disabled people constantly need medical help. This framing can make disabled people seem less human, focusing only on their differences, often medical conditions. The narrative subtly shifts; the George headline becomes Autistic Falls in the Road.*

 

This brings me to a recent exchange in the supermarket. As I picked up a lettuce, I never expected to be asked about my condition(s). Not because I’m ashamed, but because it’s personal—jarring. Yet, I was asked what was wrong with me by a stranger. Sadly, it happens too often for me to ignore. Typically, in public, we don’t ask strangers deeply personal questions.

After ten years of study and research, I’m not surprised that disabled people are frequently subjected to intrusive questions: Are you taking medication? What’s your condition? Does your disability allow you to do this? These questions wouldn’t be acceptable to most typical social interactions, so why do they become acceptable when directed at people who appear disabled?

 

Literature and Personal Truths

 

Different literary genres use distinct storytelling methods. Mysteries, for instance, focus on action and facts, leading the reader in a straight line to solve the puzzle. Memoirs, on the other hand, rely on personal truths and emotional details, asking the reader to see the world from the writer’s unique perspective. As Mary Karr puts it in The Art of Memoir: “Truth works a tripwire that permits the book to explode into being.” So why tell tales about disabled people? Needy, lazy, broken, sick...

 

Disabled writers and scholars have pointed out that narratives about disability often follow a script that doesn’t align with their actual lived experiences. The focus tends to be on medical conditions rather than the person as a whole. This mirrors real-life interactions, where people feel comfortable asking disabled individuals personal questions of a clinical nature they wouldn’t ask anyone else   (Medical Model )

 

It’s not the same, but the equivalent of walking up to a stranger and asking, How often do you have sex?

 

So, the next time you meet someone, think about how you frame your questions. Do they reflect genuine curiosity about the person? Cats, curry, chardonnay? Or are they shaped by a narrative you’ve not challenged? Let’s move beyond the jarring stereotypes and towards conversations that recognise all people as complex individuals.

*totally disrespectful I'll agree! 

Are my words safe in your mouth?

 Billy – age 4 “When someone loves you, the way they say your name is different. You just know that your name is safe in their mouth.” 

 

I don’t know who Billy is, but I’m guessing he’s no longer 4. But he nailed it. I hope I can do him justice in the following, that his words are indeed safe in my writing. I was reminded of this quote, while I was polishing my literature review months back, think Forth Rail bridge ...  Then last week I had some work stolen and it’s upset me - possibly more than it should.  I received an email asking me to agree to corrections made to a training handout of mine. It is  a little ridiculous I know! Had I been approached first, I would have shared recent happily. But I was left feeling attacked.  Since then I have had a number of conversations about reference and citation, clearly some people struggle to see the wrong in paraphrasing or copying without mentioning authors’ names.  

 

When I am referencing I am foremost keen to demonstrate the privilege it is to quote someone’s hard work. I take care to articulate their understanding, to pass on their ideas, and to respect their words. I always feel a sense of trepidation. I just hope that my struggle with the written word never makes another’s ideas seem different to what they meant, that their work is safe under my 'pen'. The numbers involved fill me with fear, (678, p. 70), as getting them wrong would suggest carelessness - when in my case it could be ham-fistedness not ill intent. There’s an ocean of difference, I think, between misspelling or interposing numbers and wilfully denying where an idea was found. Who said it, when?

 

Ahmed talks about her library of female writers as a source of strength (Ahmed, 2017). Equally, I refer to a library in my own work. I purposely look for authors who identify, show an understanding of their field or have a perspective/sensitivity aligned to the topics they write about. Black writers, that identify as anti-racist and use a critical race perspective, for example. I do not always agree with every word written, but I’ll try and convey my understanding of the cultural context and the fight for certain ideas at the time of writing. In terms of disability rights, what disabled people fought for in the 1970s will not match today’s struggle, but I would still take care to understand their perspective, rather than dismiss ideas we have been able to build on since. Opposing professional power may seem less radical today than the nuanced conversations about ableism. But the departure from established narratives they have come to inform later was seismic, because it's harder to oppose established ideas that to add to an evolving way of thinking. 

 

Together writers on a topic tell of the development of an emerging story, not the right or wrong of any point within its storytelling.  Like Ahmed I find power in being able to refer to members of a tribe, my gang, particularly when trying to articulate where I found strength in shared direction. Over the years, reading the work of others, has been about adding depth and breadth to my own knowledge. So referencing comes with high degrees of care, I am mindful that the writers I quote have no doubt spent days choosing one word rather than another. I do not wish to paraphrase, or missquote, writing out of context in a way that would alter meaning. I’ve come across this, thankfully rarely- it stinks!

 

With practice I’ve become more able to think about the possible identity, perspective and  professional context in which writers write. What are they seeking to convey overall, what do they care about, and maybe what they are fighting for or against. The brackets, name, and numbers, are ultimately about celebrating another person’s hard  work. Respecting their vision, feelings and thoughts - motivation and passion that shines through text. Sometimes this means accepting idiosyncrasies that may be at odds with today’s culture, sensitivity and understanding. Yes, as academic conventions dictate, it is about the form, but it's about respect for knowledge and storytelling - a writer’s story with its unique narrative. 

 

More specifically for the researchers among us, the literature review I think has the purpose of setting the pieces of work we draw on in context. No study is going to be the first or last piece of work on the subject. The review is a map of past and present thinkers in your field of investigation. For me it’s been less straightforward that I expected, but I found important in the process was connecting past and present, setting a scene of change.

 

 

Trust me, why would I lie!?

My thanks to Touch Consulting, and the Joy FE community, who makes the #FestivalFridays conversations possible. A learning network of courageous practitioners who are resistance to the established norms that can hinder the well-being of those struggling to flourish within education.

I enjoy the enthusiasm in the lead up to a presentation, there’s an energy that comes of being wanted. A thrill, and anxiety, that is motivating and exhausting in equal measure… I’m no longer surprised that the linear story I have in my head, put into text with supporting 34 snapshots, rarely ever matches the messiness of the conversation in the room. Years of keynotes do not compare well to the joyful chaos of building understanding in the room.

I started with a trigger warning, not because it’s fashionable, but because we know that 9 in 10 disabled people report hate crime every year.  Therefore, we can assume that violence is recognised in most rooms, because one in ten individuals can identify as disabled- should they wish. I explained that while the story was mine, we were having a professional dialogue, so the storytelling was framed by evidence and theory [Disability Studies among others]. 

I am sharing professional wisdom - that’s 30+ years of conversation.  Like discussions about critical race or gender, ones about critical disability is a specialised subject with an extensive knowledge base [you wouldn’t stop random individuals on the street as it could be potentially traumatising]. 

Othering emerged fast as an emotional tension in the room; talking about disability is uncomfortable because the ‘them’ and ‘us’ continuum becomes more visible when we talk about who’s in/out. I too get tongue-tied and stutter in the choice of ‘them’ and ‘us’. Should I identify as a disabled author, or am I writing as an equal scholar in a discipline I've studied for decades - leadership. I'd prefer to let people identify as Disabled or non-disabled, rather than assume ... get it wrong. 

Clearly, there’s more to it than what’s wrong with you… what about society? Where’s the difference, mobility, impairment, glasses, dyslexia?  The question is do you identify, surely? Do you face ableism? One in ten of us may choose, that's a huge group. 

Truth is terminology, or lack of it, hinders definition or clarity. A single word, disability, covers so many notions, it’s not surprising we struggle to find accuracy - let alone alignment or agreement.  Words fail when it comes to nuance: label, diagnosis, politics, difference, impairment, network, community - disability has been used willy-nilly and every which way. To define ableism, I have used ortho-toxic, a portemanteau term, to describe the violent ideas and assumptions imposed on the disabled population. It means I don’t have to point a finger - at individuals or groups - people can identify as they wish.  It’s clear it’s not always a reflection within easy reach, many will say they’ve never encountered sexism, for example, others say islamophobia appears the minute they cross their own doorstep. 

It is surprising how many of us can ignore the subject of disability altogether, while others see it as an aspect of human diversity, yet more will recoil in horror or embarrassment… how dare you bring your elephant to the room…  it’s hard to identify, as I explained, you run the risk of being dismissed [see Kafer on testimonial injustice].

Misrepresentation is evident in the textual world, where a noticeable silencing tells us that disabled people are untrustworthy.  Disabled people are not recognised as authors, thereby denied a voice in mainstream debates that impact them negatively. Rarely referred to as writers with authority, creators of knowledge, in documents that largely reinforce their marginalisation instead.

Why would I lie?

This shape of silence is hard to describe but essential to describe the framing of d/Disabled authors in text. Selective editing of 1st hand experience, giving a framed story with a medicalised view of the person as the problem. Denying the systemic, institutional and social violence reminiscent of #MeToo and #BLM campaigns. It seems the paid-pen exercises its privilege, not exclusively held by white, professional men, but under a more omnipresent cis/white/elitist gaze. Resistance is far harder for the pens held by those not fighting racism, classism, sexism, homophobia, religious intolerance or prejudice linked to partner and family choice. The 9 protected characteristics should be equitable categories, but cumulative impact is rarely articulated in guidance. If disability is mentioned on reference lists, details are shed, and divergent voices are erased, as unconsciously layers become shorter to save wordage in the final draft. Where disability may be ninth in a list in the introduction, sometimes mentioned in the review, it then disappears in discussion… as for the reference section watch the tumbleweed.  Of course, disabled writers may not identify for fear of having their texts judged harshly, and many write from 1st experience rather than with activism or accountability to other disciplines and professional journals. Disability in title rarely translates to existing knowledge, or knowers in the narrative. Assumptions and bias obvious in the individualising, personalising, uniqueness of condition or individual. This writes away the dimensions of institutional and systemic discrimination and societal disadvantage.

The impact of silencing is apparent where assumptions become myths reinforcing the stereotypes that themselves grow from ignorance - not experience or research evidence. The belief that a mere few need consideration, therefore the problem can be attributed to the unlucky or the undeserving. The omission in disciplinary and professional texts, forgotten in the granular, or believed to be the problem [cost] of another department, profession, or institution. The idea that there’s a line to be drawn between those who can and those who cannot fit into the system; the rules imposed keeping some watching from afar and others further yet beyond the walls. Finally, the dehumanising of those then viewed as public property; from research to the pool-side, experience is used, revised or demanded as it is considered both cheap and devoid of typical privacy - no consent or care required in the probing.

Accountability, or rather the legitimacy gap that is articulated here, denotes a breakdown of trust where reputation lacks any acknowledgement to the disabled population, disability equality or the interests of the disabled people’s movement [D/deaf and Disabled People’s Organisations].  Where legitimacy theory can be defined as the ability to respond to civil groups it will need to demonstrate an intent to address their interests fully in organisational accounts - and society’s storytelling. 

As Oswick et al. put forward, a radical travelling theory is one that moves beyond its own domain of production to be adopted by existing ones with equal measure. A theory that adopts anti-ableism in its intent, therefore, needs broad applicability [Social Model]; so that it can effectively begin ‘a process of repackaging, refining, and repositioning a discourse (or text) that circulates in a particular community for consumption within another community’ (2011, p. 323).

From the sadness at birth, testing for school, a poor practice that stigmatises, barriers, denigration and rejection in the workplace, made victims by justice and barred entry to transport, housing and leisure, the reduction of the human rights agenda applied to disabled people is reduced to care and cure, and adds massive cost to society. Plus, there's no price on the emotional burden imposed on many!

Trust me!

Just ‘any effort’ isn’t sufficient, the imperative behind practice needs to be with the right effort and have deliberate intentionality. While good, best and proactive practice sometimes equates, addressing ableism doesn’t happen by accident while chasing efficiency. Because being better at treating people fairly means recognising an agenda broader than financial value. Divisible or conditional human rights is a nonsense! Cutting down on worth and values, will not achieve more equitable culture(s). Practice will need to change to avoid the very activity that compounds the structural discrimination and the impact of inequality experienced by so many.  Addressing ableism is like tapping your head while rubbing your tummy, different actions are required at individual, team and organisational levels. 

 

 

Bibliography

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Trigger warning - thinking hard hurts

I’ve really struggled to put words around this topic, so please share stuff in the comments if you can. I was recently at a meeting when a trigger warning was given in the opening words. Initially, I was stunned, then relieved, then angry, then reflection on the action changed the way I thought about trigger warnings. 

 

Thank you, Jo and Elyssa (@JFletcherSaxon @elyssa_shack) for your thoughtful, intentional and respectful practice. I know safety doesn’t happen by accident, you took steps to keep us safe.  I thank Catina Barrett from WLN, her practice and writing have changed my perspective, helping to deepen my thinking on this subject. Her words are my jump-off point here, Catina writes on trauma:

… feminists changed that definition to include domestic violence, to include sexual abuse and harassment of women, and others, but in particular, of women. And so I think the inequalities that we see are intersectional, transnational inequalities.  (Joyfull Education)

 

Complexity is not easy to convey, because these things are seldom simple, so let me unpack...

 

Trigger warnings are typically used to give people with post-traumatic stress disorder, and others who have experienced trauma, an idea of the content they're about to encounter. The warning is intended to prepare those readers - or viewers - to expect words that may trigger a significant, and possibly debilitating, emotional reaction. PTSD, a response to trauma, is sometimes a result of hate crime. Hate crime is defined as: any criminal offence that is motivated by prejudice - sexism, racism, ableism, classism, homophobia, religious intolerance, individual and family choice  – the hostility based upon a victim's difference or a perceived identity. The literature articulates hate as extremely hard to recognise by those privileged to not experience it, and because institutional culture helps hide violence,  therefore prejudiced behaviour is hidden from public view.

 

I was stunned

Feminism might not strike you immediately as a triggering topic. But, if you take a minute to think about its opposition to misogyny and sexism, it’s clear that conversations will involve the articulation of a characteristic oppression - sexism. Feminist conversations, therefore, will articulate the violence against women that remind so many of us of the experience of pain and shame.

 

To address sexism, as discrimination and injustice, involves discussing the ideas that fuel aggression, the misrepresentation of women found in those narratives that drive hate speech.  We can’t talk about a whole population’s safety without talking about the specific characteristics of an oppression weighing on them. The ideas that build cumulatively to marginalise groups. Oppressive organisational and institutional ideas, weighing on individuals within groups, that ultimately play out inequitably across whole localities.

 

Talking about equality, therefore, requires an intentional warning to create a courageous space, because injustice is hard to talk about. Should we ignore the impact of past pain we are likely to impose its reality once again. The experience of inequality is at best unsettling, and if you’re a victim, then re-living violence can be distressing. Being forewarned tells those in the room that this lack of safety and individual’s pain is acknowledged. Taking responsibility is key here, the warnings are intentional, and demand the knowledge that what will be shared may harm. Disregarding this potential harm, unfortunately, ignores the victims in the room. Furthermore, telling someone to feel safe, puts the onus on the victim to anticipate and then manage their own distress. It’s this imposition that denies experience, by silencing feeling, rather than speaking to the impact of sexism - action and ideas that are often violent, upsetting and oppressive. 

 

Then relieved

Practices that keep us safe are sometimes seen as over the top, because they aim to help the few, and they are seen as superfluous to the most. Where badly explained, they can be assumed not to matter, and often tend to disappear in the rush and informality of a shared space. Unintentional comments, such as "we don’t need introductions, this is a safe community, we respect each other…" may stop us from using the better practice of taking care and/or doing the safety checks. Forgetting those most harmed stops us from thinking about the present harm of brave conversation, and ignoring the triggers to those already carrying the pain of past hurt. The very warning of sexism, racism, homophobia, religious intolerance, classism will stir feelings, but at least allow the individual to make decisions. Telling people that they can turn off the camera is explicit. It calls us all to acknowledge what will hurt some is in the room.  It draws the group’s attention to the room - its elephants. 

 

Then angry

So, why anger?  It suddenly occurred to me that I’d never been in a space where I had been warned about the ableism I was about to experience. Never!! I’ve seen trigger warnings, but rarely about ableism - the oppression disabled people face. This, I think,  has a lot to do with language and a wider lack of nuanced definitions.  Too few of us work to a written definition of ableism, fewer still engage with its parity to other characteristics, the understanding of institutional discrimination and societal injustice. The forces that drive ableism, that many will not equate to harm or oppression. This lack of fluency translates into poor practice, for example being asked to not make a fuss, or to ignore hurtful comments because they were not meant, rather than exploring why ideas can be harmful. Far more oppressive, in my experience,  is that those most triggered are asked to share why they feel uncomfortable. Again adding to the initial impact of disrespectful wording and poor practice, by being asked to explain why ableism, for example, is traumatic. It’s rather like having to describe what is crushing you, to prove how really painful it is. 

 

Leadership 

Viewed as an ability to account, accountability calls us to question the organisational impact of business activity on populations. Therefore, it is not enough to just consider the people in the room, certainly a good starting point, but the locality more widely. As statistics suggest, disabled people in any locality make up 1 in 10 [of which fewer will identify as Disabled], then most rooms need to be safe. The trigger warning, therefore, needs to address the possibility of the people in the room, gestimated on population. Trigger warnings are required, therefore, without anyone needing to raise a hand. Because, if demand identity - or victim’s disclosure - then we’ll doubly add to potential discomfort and harm.

 

Without the trigger warning, erasure replaces accountability, as the power dynamics shifts blame onto those in receipt of harm – not to the topics of conversations that fuel it. Highlighting possible harm in a trigger warning, by defining the ageism, classism, racism, homophobia in the room, demonstrates the direction of responsibility. Better to articulate warnings at every meeting, calling attention to the space isn’t safe than impose the dismissal of unfair rules, barriers to participation or the harm of meaningless wording. The aim is to highlight the violence, not perpetuate an assumption of equitable safety. Telling me to fit in isn’t kind, but an acknowledgement of difficulty Is, I can live with Imperfections, but I’m oppressed by denial and lack of acknowledgement.

 

Trigger warnings, from this perspective, is the articulated accountability – reflection for practice - in stated acknowledgement. The ability to view the potential harm of a courageous conversation. It is the responsibility taken to give a heads up, by saying ’’we understand this can upset”. A seismic shift in power-sharing, because taking account of potential harm, demonstrates a voiced responsibility for safety.  

 

If you are not clear as to what may be triggering then best not go public. Celebrating community and holding abuse up for scrutiny are very different. If you are sharing stuff on social media, your readers will value a trigger warning if content is about the harm imposed on groups, because those viewing your content are a diverse group and some will be victims.

 

 

Ableism ?!

The word ‘ableism’ has gained much currency these past few years. I have noticed the hashtag increasingly being used by the disabled community across social media. Yet, it has no doubt remained a mystery to many. But for Disabled people, the activists among us, it has become hugely significant, as it represents a parity to sexism, classism, homophobia, racism, religious intolerance… words used daily to denote the organisational, institutional and structural injustice many individuals from marginalised groups face.

 

A working definition:

Without a definition, there is no way of identifying the characteristic discrimination imposed on disabled people. If we don't speak about ableism, it doesn't exist, because it is not something we give time to - or that we acknowledge. I work to two definitions based on what I’ve read:

Ableism: a specific type of oppression, akin to homophobia, racism, classism, ageism, and sexism, held in the culture and language that inform society’s debates.

Anti-ableist: a defined position against ableism, the characteristic oppression that disabled people face - as in feminist or anti-racist.  Theorising, for example, with an anti-ableist legitimacy involves explicit reference to disabled people as tellers in a storytelling that holds their interests at their heart.

 

I work as an anti-ableist, which means in seek in my practice, and my writing, to articulate an opposition to the ableism in the world around me. Notwithstanding the experience of individuals, and while allowing them choices of identity, I act to disrupt the institutional and societal narratives that perpetuate ableism. Disabled authors have gone to great efforts to define their experience, by doing so they encourage us to focus on the injustice they face.  Moving beyond issues of identity is critical, because while the predicament of impairment or difference and personal prejudice is significant, but it does not go far enough to explain the startling figures that characterise the inequality the disabled population face. Yet it is an inequality many cannot put a word to, despite its toxicity and omnipresence, the storytelling that surrounds us is ableist.

 

In the same way that critical race theory has given us a language to articulate the structural racism people face, critical disability theory has led to a growing terminology for the societal discrimination imposed on disabled people as a marginalised group. As a specific, insidiously hidden discrimination, ableism has a unique character. The idea that disability sits on a continuum at the opposite end to ability is to misunderstand the meaning of the marginalisation imposed on disabled individuals. If there is an opposite, it isn’t perfection, skill or ability, but a lack of privilege - the possibility of living without being viewed as a problem. It is the notion of ‘able’ as the norm that defines the unearned privilege afforded to those who do not need to answer questions about their difference. Beyond individual experience, ableism is held in conversations at group, department, organisational, local and national levels. Each holds a distinct way of silencing, or distorting, the voice of disabled people by denying their experience, domesticating their ideas, appropriating their knowledge or refusing to theorise by including divergent ideas.

 

It is not so much that people go out of their way to speak badly of disabled individuals, it is more so that we’ve become accustomed to believing the tales we hear about them. Therefore, disabled authors are less frequently referred to as trusted and truthful storytellers. More often found in specialist literature, their accounts are often absent from organisational, institutional and public debates. Furthermore, in the media, disabled people are often described as saints and sinners that laud or vilify their individual stories. It is in the globe-local storytelling that the voice of disabled people is erased. Furthermore, we’ve forgotten to question why. When written into guidance, policy and strategy, the assumptions derived from the saint/sinner stereotype become apparent, not as a caricature so much as forgotten altogether. That’s to say most will forget to think of disabled people as a sizeable population entitled to parity rather than the isolated individual needing to get off their backside – because the saints are doing it so valiantly. Ableism is not written into organisational accounts, however, documents such as audits, reviews, external communications, and annual reports generally fail to name the negative impact of the business on the disabled population. Thus textual worlds fail to articulate an opposition to the institutional disablism within a sector or the ableism in society more widely. Therefore, failing to acknowledge the contribution to human rights erosion imposed by growing inequality, and the lack of measures to gauge it, while attention is focused on what makes money.

A cycle of misrepresentation 

How does a gap in legitimacy grow between organisational accounts and the voice of D/deaf and Disabled People’s Organisations?  Why is there an absence of measures calculating prejudice, disablism and ableism? A lack of response-ability towards the disabled population. 

A vicious circle: 

 

As the diagram above illustrates, a cycle is perpetuated in conversations where the speaker reacts to what they have heard about disabled people [prejudice], rather than question the storytelling that misrepresents them. In the assumption that what the speaker has read or heard is correct, many will repeat largely exaggerated ideas, rather than stand against the ableism within the account. In society's storytelling, where the voices of disabled people are missing, their interests are often replaced by problems based on assumption -  rather than disabled people's experience or research evidence. In turn, these unchallenged beliefs left unquestioned drive negative attitudes. In this cycle, ableism often goes unnoticed, hidden in words, phrasing or sayings that seem innocuous but no doubt harm. This harm will be reacted to more or less subconsciously, with feelings and reactions in individuals who may also internalise ideas about themselves - the stereotypes. 

   

Often the gap between what we believe and what we think is so great, that it is hard to think ourselves out of a stereotypes by changing the words use or the actions we take.  

How do we interrupt this cycle?

Each arrow calls us to stop and think in order to change things in different ways.

 

Spot the stereotype: there’s no easy solution, foremost we need to be willing to learn from disabled individual's experience, knowledge and professional wisdom. That's disabled authors as storytellers: activists, professionals, academics, and D/deaf and Disabled People’s Organisations. Personal accounts will vary, and no disabled individual owes another a story. There are forests of information [books, websites, videos, podcasts…] take it steady. I suggest short introductory texts, preferably with a degree of rigour, based on evidence, because while unique perspectives can be made to fit a dominant narrative [ableist], getting the framing right alters the narrative.

 

Challenge assumption: Reflection isn’t easy, but time taken to think about immediate re-action, to determine why we act / think certain ways, may interrupt a bias we aren’t aware of.  The pervasive, often innocuous, nature of stereotypes in our conversations and across media, means there is lots to unlearn…. Literally unthinking the unthinkable is a job in itself. Disabled or not we owe it to those around us to figure out the lies and the myths that perpetuate negative ideas in storytelling. 

Consider the tellers: try to understand stories from an alternative perspective, placing disabled authors as the pen-holders. In most everyday conversation, the tales we tell, the unchallenged storytelling, erases the experience, knowledge and wisdom of disabled people. Sometimes in ways even they cannot put into words. The more you hear you’re rubbish, worthless, weak, wrong, pitiable… the more you believe it. The more you feel rejected, the more you fight or give up. No two disabled individuals will have the same feelings. [heavens, my feelings change every hour on the hour]. I’m always grateful when people interrupt my learned thinking. 

 

Understand communication: behaviour that confounds you may indeed be a challenge to be more empathetic. Are disabled people responsible for stereotypes, or have we led them to act in response to a single choice between saint or sinner?  No one can answer this without first trying to understand the internalised ableism may lead individuals to do things that mistily those around them. Hushing the voice that says you’re rubbish, work harder, prove ‘em wrong, show strength, hide vulnerability, is not only difficult but hugely exhausting. 

Be disability specific – anti-ablism 

D/deaf and Disabled People’s Organisations present an authentic source of the population’s interests in a way that unites a multitude of voices on a joint vision. Activism is a more complex notion than choice of identity and personal experience, as it draws on evidence and knowledge which can also subject to ableism. It certainly is a way of avoiding the problems often attributed to disabled people as a group. 

 

Human rights and movement interests: 

 

 

For professionals willing to address this matter, Disability Equality is a subject area based on disability studies that provides a good entry point. No doubt due to the barriers faced by disabled individuals, and the lack of recognition the Disabled people’s movement receives as an equivalent voice within civil rights groups. There were no words framing ableism until recently, akin to feminism, sexism, homophobia, or white privilege. Despite an era of rising social awareness, the institutional and societal injustice specific to disability had no name, no voice, and little more than a network of grassroot organisations with an oral history.

 

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