I write this, not based on personal preference, but informed by professional development and academic study. How I talked about disability was very different many moons ago. I used a personal narrative, articulating my own experience, rather than including cultural and societal perspectives. As a disability equality training specialist and an accountability researcher, I wanted to share some thoughts on the subject. To sound more friendly, however, I’ve ditched the professional tone, and gone with the I’d like to read format:
The way I write about disability has changed significantly over the years. I have facilitated conversations about disability equality – based on Disability Studies and the ideas of The Disabled people's movement. Furthermore, I have spent 10 years - MA and PhD - adding to my understanding with research. Think of it as 10000 hours of work and 4000+ texts.
As an individual - in private - I can choose the words I want to describe my own experience, thoughts and feelings. But as a writer, in public if you like, I hold myself accountable to a representation that is informed - not drawn from assumptions. I am far more careful to seek the ideas of those working in the field and current conversations within Disabled people’s movement across the globe. These days, I articulate matters relating to individual experience, group interests and population concerns from alternate perspectives. As you would express sexism, gender equality, and feminism in different ways. I try and paint culture from different angles, in order to describe matters of experience, disadvantage and inequality. Dialogue, thoughts and descriptions can be used to pen a character’s wisdom, social interaction and knowledge with degrees of nuance. The following therefore are broad strokes on a VAST canvas.
Population concerns:
Recent research has highlighted the lack of representation of disabled people in the arts, more specifically the way disability is used as a plot device, a polarity in characterisation, and/or a foil to elevate the central protagonist.
Therefore, I would like the story to frame disabled people as a large group. One in ten of us could choose to identify as D/disabled, though many people with significant differences don’t like the term disability or identify / engage with the Disabled people's movement. However, including disabled characters within a story makes a huge difference to people like me. Passing reference, a nod to diversity, tells many readers that we’re not ignored, forgotten or living in an alternative universe. [see The Disabled people's movement].
Rather than give readers an overly private view of a character’s failings a description allows a legitimate telling of disadvantage. For example, "her house was modest because being able to buy the access she needed had required compromise, there were stairs and there was no drive or flat access, but once inside it was easy to get about the open layout."
Group interests:
I am always overjoyed when disability is not equated to illness. It isn’t that disabled individuals don’t get ill, and many understand that the relationship between illness, difference and disadvantage, but individual experience is far more complex than common assumptions lead us to forget that chronic pain is never ending.
Therefore, where the story allows, I’d like to read something about more about the negative ideas disabled people face, the obstacles they face, rather than an experience that makes the personal too public. Most triumph-over-tragedy plot lines are voyeuristic, and ignore the civil rights struggles imposed on disabled people as a group. Disabled people’s interests are rarely explicit in language and text, yet they are easy to find when searched for. What many of us assume are problems are often prejudicial beliefs, not the interests many activists write about. A little research – goes a long way - and will give a willing writer a plethora rich in ideas, adding depth to existing plots or storylines, rather than a misrepresentation that adds to a more widespread misunderstanding.
Personally, I prefer it when ableism is referred to - even obliquely - without character flaws being implied. Avoiding stereotypes, while not easy, allows for plots that neither labour nor dismiss the group oppression the disabled population face. Similarly, avoiding judgemental descriptions of characters can avoid racist assumptions- however unwitting.
So rather than describe a disabled person as plucky or brave, "like many Bev had faced adversity, and like many did not view the effort this took as a choice .’
I would like to read about the extra effort and demands to fit in that many disabled people face. It doesn’t have to be detailed. But the idea that society can impose a negative view of disabled people, or physical barriers, really helps counter the idea that disabled people are the problem. I am relieved when stories avoid obvious stereotypes, super Crip, triumph over tragedy, overcoming personal difficulties, and cure[s] that equate to becoming a better person... I could go on, makes me heave.
Personal thoughts:
I would like to hear a little empathy and sensitivity in the storytelling, where impairment or difference is discussed. Exposing a personal, or private, experience in dialogue is okay. But, as Amy Tan explains, writing it as an internal dialogue allows a more respectful way of articulating personal/public boundaries. Disabled people’s voices, like bad English, often sound untrustworthy or incorrect. Saying, ‘I was scared, and angry, wanting to hide!" Doesn’t convey: "she felt the world was hostile, and people largely ignored the situations she faced."
At work
In my own storytelling, so far professional and academic, I place myself as writer, not author. I talk of a shared perspective, group interests, set as an alternative to more traditional storytelling. This allows the voice of disabled people to be read as trustworthy, authors of a story that has characteristics informed by other disabled writers, activists and academics. In the feminist tradition, of ethics of care and craftivism, and care-full penship.
In my thesis I discussed at length why articulating a public story is especially important for accountability, as the writer has to carry another narrative with legitimate knowledge. I explained that I did not think it was about preference, because as an individual what I say has no more weight than anyone one else. However, and it’s a big but, the knowledge I’ve gathered over a decade wasn’t effortless, easy or cheap. As I conclude:
The world has changed, but pace is slow. I undertook this research because, as a trustee of 3 organisations I was continually baffled by the lack of reference to the disabled people’s movement or disability equality. It struck me as unusual that while people were sometimes fluent in their reference to feminism they had no language for anti-ableism. If you put 10 feminists in a room you would get 10 definitions, but that man on the omnibus could not put words to the toxic nature of his pen. More generally when it comes to the lives of disabled people they remain an unknown for many. Far worse I think, in academic texts, where I had expected disability studies to be referenced, writers often ignored, reinvented, or misrepresented the voice of disabled people. (Chapman, 2020 p. 266).
I work to 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 storytelling that holds their interests at their heart.
Able privilege: the unearned advantage of not being judged on ability, the absence of prejudice, discrimination and injustice weighing on the disabled population. A position often left unarticulated and unchallenged by non-disabled people unaware of the disadvantage ableism imposes.
Without a definition of ableism, when disability is written into text in guidance, policy and strategy, assumptions derived from negative stereotypes tend to replace critical ideas. Not so much as a caricature of disabled people, but as myths in a narrative that distorts the group’s interests. Those labelled become outsiders, often forgotten altogether, beyond monitoring categories and debates about care.
Glossary for academic writers:
Ableism: a specific type of societal oppression, akin to homophobia, racism, sexism, or religious intolerance held in the language of communities and culture of society more widely.
Deaf and Disabled People's Organisations: groups and networks run and organised by Disabled people, where Deaf people recognise themselves as a community with their own language – British Sign Language.
Disablism: a specific type of organisational oppression levelled directly at Disabled people, much like misogyny or religious hate speech that operates within homes, public spaces and across organisational boundaries.
Disabled people (with a capital D) is used to in this document reflect the choice some people with impairments who choose an identity and political voice aligned to the Disabled people's movement. Disabled people is used more widely in the United Kingdom in preference to ‘people with disabilities’ globally, to reference activism and acknowledgement of Disability Studies in political unity.
The Disabled population is used in the following specifically to indicate that not all disabled people are part of the Disabled people’s movement, or self-identify as Disabled people, or even like the term ‘disabled’. However, ‘population’ is used to indicates the large number of individuals who may have impairments [estimated at 1 in 10].
The Disabled people’s civil rights movement, or the Disabled people's movement, used to indicate the individuals who view the group as one of many civil rights groups. Disabled activists can be viewed as anti-ableist,as holding a position against ableism – like feminists or anti-racists.
Impairment is not a word the whole disabled population are comfortable with, it is used in the following to mean condition, diagnosis and difference. However it is never used to imply individual’s identity which is better understood as personal choice.
Professional is used to indicate people working in paid roles within the criminal justice system.
For more ideas on representation do read my do do list: list: https://disabilityequalitycritical.blogspot.com/2022/05/do-do-list.html
