Discuss, curse and flirt

Dear Debriefers,

Today's edition is about communication: from signed communication in a village in Nepal to how we do better disability advocacy.

I pick out highlights from academic research to share insights on the ways sign languages are used and made by those with and without exposure to them.

And I share reflections on the cost of explaining our access needs, a guide on how disability advocacy can “tell our story, not theirs” and the words of disabled people whose heroes were villains.

Reader support makes the Debrief possible. Thanks to new contributions from Finn and Sonia.

Discuss, curse, and flirt

I love language learning and it's been a huge part of my adult life. But sadly I've never gotten further into a sign language than a taste of Bangla Sign Language when I lived in Bangladesh. It was striking that even after a few hours of lessons I could have a brief exchange. Somehow signs and gestures got me a lot further than I could have after the same class time in spoken Bangla.

Research from Nepal throws light on just how much of this communication is possible. Making Sense is a new open-access book from E. Mara Green, a hearing anthropologist from the US. In it she explores the way deaf and hearing people in Nepal understand or misunderstand each other with both conventional and emergent languages.

Green's long term field work explores a complex linguistic environment where people communicate in Nepali, Nepali Sign Language and something Green calls “natural sign”. “Natural sign” is a term she translates from Nepali Sign Language (NSL) to refer to how deaf people communicate when they, or the person they're speaking to, doesn't know NSL. Natural sign is made up of gestures, signs, and shared references:

“Briefly put, natural sign involves a small repertoire of widely available, shared signs complemented by strategies that make use of the body’s capacity to point to and mimetically represent places, people, movements, objects, and other elements of the social world. Natural sign practices vary but are more conventional and conventionally understood across signers than home sign, and less so than shared sign languages and emerging sign languages”.

Green calls natural sign an “emergent language”, a term which means “communicative practices that depend as much on shared desire to communicate as on shared grammar”. Green gives examples of both hearing and deaf people telling hearing people that they can communicate more with deaf people if they want to. The results can be very rich:

“I frequently have found myself in awe of how people communicate, casually, easily, and effectively, in the absence of what most people in the world think of and experience as language, whether spoken or signed. In months of living in [the village of] Maunabudhuk, I saw natural sign used among deaf people and between deaf and hearing people to exchange news, make jokes, negotiate work arrangements, discuss national politics, curse, flirt, argue, describe past, ongoing, and hypothetical events, evaluate others’ internal states, tell stories, express worries, and wonder about the future.”

When it works, natural sign is supported by shared references and practice communicating with it. For example:

“Many people in Maunabudhuk raise pigs. I learned how pigs are butchered, with a sharp stab to the chest, that PIG is signed with an index finger jabbed into the signer’s own ribs, that eating pork is associated with certain ethnic groups, and that asking ‘PIG EAT?’ is one way of ascertaining ethnicity.

But as Green describes there's an “immense variability” not just in how people communicate but also whether the communication is successful. Natural sign doesn't have all the resources of a conventional language, and beyond that it is by no means a given that deaf people are recognised as communicating or possible to communicate with. Even the possibility of exchange breaks down if someone looks away.

For Green, natural sign “lays bare the bones of human communication” and its ethical foundations:

“the way others must attend to someone in order for them to be understood; the way that making sense to someone requires that they make sense of you; the entanglement of word with world, language with context, semiotics with sociality. Natural sign shows that ethics is not only intrinsic to linguistic interaction but also grounds its very possibility.”

Failures in communication can be devastating. Language deprivation has profound effects on all areas of life. If deaf people are victims of violence or other wrongdoing they might not be taken seriously in identifying their attacker or asserting their rights.

But even as Green recognises “language deprivation” as an important framework in fighting ableism, it's not a category she uses in this book. It's not a category that those she researched with used. And her work focuses rather on the agency of both the speaker and those they address:

“I hesitate to call any particular person with whom I worked ‘language deprived.’ It is important to me to describe my interlocutors’ creative and agentive communicative practices. It is equally important to me not to smooth over the rough patches; not to pretend that I did not see people who were lonely and in pain at least in part because others would or could not understand them—and I seek to give emphasis to the role of addressees and to both the ‘would not’ and ‘could not.’”

Ethos of cooperation

As Green showed in Nepal, language skill isn't just about how much grammar or vocabulary you know. It's also about how you bridge gaps in what you or the person you're speaking with doesn't know. Something that has fascinated me is that some sign language users can do this even when they sign in totally different languages.

These fluid and adaptive practices are documented in an article by Annelies Kusters, the UK's first deaf professor of Deaf Studies. In More Than Signs she shows how “calibrating” – adapting when signing with someone from a different country – has gone on to form an essential part of the practice of International Sign (IS). Her research is also shown in a film series, This is IS.

IS itself comes out of international meetings, and incorporates signs from different national sign languages. Kusters points to debates over whether it should be seen as a language on a par with national sign languages or rather as a simplified contact language which linguists would call a “pidgin”.

Kusters shifts that debate to explore how IS is formed by speakers “calibrating” to each other as well as its usage conventions. International conferences and events held by deaf organisations have led to “the emergence of common repertoires of signs”, primarily taken from European sign languages and American Sign Language. And at the same time IS is “grounded in a moral imperative for cooperation”:

“interlocutors are expected to adapt their language to enhance mutual understanding, exemplifying IS’s intrinsic flexibility and variability with the central goal of achieving comprehension”.

For Kusters, IS “exemplifies a coordinated interplay between standardized and adaptive signing”:

“This duality in IS underscores its intrinsic fluidity. The seamless transitions people make between standardized IS and IS as a more adaptive and distributed practice, coupled with the readiness of diverse actors to get involved in the calibration process emphasizes IS’s ethos of cooperation.”

Seeing IS as a practice also takes Kusters beyond the language only as a signed form. She sees a versatility that extends to elements from diverse spoken languages being brought into IS as well as its interplays with technology and writing. For example:

“conference presentations incorporate PowerPoint slides or posters, and in informal conversations, people showcase images on their phones for communication, write in fresh snow during a winter sports event to communicate with fellow deaf athletes, and touch objects, such as a plant in a hotel bar to signify the concept of ‘green’”.

Intelligible to the able-bodied world

The challenge of communicating with others goes beyond sign languages, of course. A paper by philosophy researcher Rhea Ienni looks at access without the demand for explanation. As Ienni says, securing access often needs justifications in other peoples' terms:

“Within Western approaches to disability, the expectation for disabled people to ‘prove our disability’ is not only central for receiving access supports, but also for being accepted by those around us. Disabled people must make themselves intelligible to the able-bodied world under the threat of not getting one’s needs met, exclusion, and violence.”

For Ienni, this deserves attention as it negatively affects the lives of disabled people:

“I am forced to flatten the complexity of my experience in order to make it understandable to those with vastly different life experiences, necessitating an ongoing alienation from myself. Instead of being in my body and navigating the world in response to my own needs and inclinations, I am forced to package my explanations, movements, and even appearance in such a way that they can be best understood and received by my intended audience. I alienate my experience to cater to those in power under the threat of not getting my needs met or being treated as less human. Consequently, in every moment of asking for help, I experience the precarity of knowing that the access supports I need are only as secure as my ability to bridge the gap between my experience as a disabled person and another’s standards of what is legitimate.”

The alienation of how we are pushed to talk about our own experience is something I've long felt myself. I worked in disability policy but was aware it couldn't speak to the complexity in my own life. This is one of my key motivations for writing the Debrief, to make space for more nuanced narratives and to be able to share our experiences in our own words.

Ienni's article points out that we also need a solution in the other direction. Sometimes we need to be able to say less: what she calls a “right to access opacity”. Ienni sees this as “imagining accessibility outside of forced identification and categorization”. It would involve both making the world more accessible structurally as well as providing access supports “as they are needed without asking to know why”.

Tell our story, not theirs

Meanwhile, back in the world of advocacy, “By us, For us” is a useful guide on disability messaging addressed to the able-bodied world. It comes from Disability Advocacy Network Australia (DANA) together with Common Cause Australia and Centre for Australian Progress.

The guide is practical, readable and will likely change the ways you advocate on disability. It shifts away from messages that emphasise vulnerability and shows how to reframe discussions. Here are some examples of alternatives they provide to commonly-used messages.

For example, in a phrase I might have used myself:

“Disabled people experience discrimination and exclusion in the health system.”

But identifying a barrier without saying who is responsible can make it seem impossible to change. The guide proposes to rephrase:

“The people currently in charge of health services often discriminate against disabled people and exclude us from essential services that we can’t physically access or that don’t meet our needs”.

Every disability advocate I know has complaints about benefit systems, and the guide gives guidance how to make them constructively. For example, in referring to the National Disability Insurance Scheme (NDIS), rather than saying this:

“The NDIS is a costly failure and a broken system.”

The guide prefers to show context, that the failures aren't inevitable, and that change is possible:

“Ten years ago we got together and invented the NDIS to ensure disabled people could get what they needed to live good lives. We should be proud of our society for starting the NDIS, but now, just like any system, it needs adjusting with the benefit of experience.”

And similarly, rather than just saying that disabled people “must be consulted”, the guide proposes language to make clear why:

“Disabled people must lead the redesign of the NDIS. Between us, we have an enormous range of expertise in disability policy and beyond. We are also the experts in our own lives. All of these forms of expertise are vital to good decision making.”

Moral compass of a subway rat

To close out, some passages I've appreciated...

Translate critique into actions. In an essay on the neurodiversity movement, Ne'eeman worries “that neurodiversity has not lived up to its promise” and that, despite its success in establishing new narratives the movement has had “limited ability to secure material change”:

“Despite neurodiversity’s cultural currency, we have won surprisingly few shifts in autism service-provision and research, the primary areas the movement emerged to target. This reflects our community’s reluctance to translate critique into actionable strategies for change. Such efforts are slow, painstaking, and frankly boring next to the social media campaigns and the rarefied academic critiques that have captured the attention of many.”

The monsters that made me. Matt Lee on how horror movies changed his relationship with himself. “Growing up disabled, all of my heroes were villains”:

“From a young age, I subconsciously related to monsters, madmen, and every combination thereof. Many even taught me to frame disability in a positive fashion. The archetypal antagonists from the golden age of horror cinema — the Wolfman, Dracula, Frankenstein’s monster — all underwent a transformation to be imbued with extraordinary, otherworldly gifts. Their differences were a source of power, inverting the traditional view of disability as a hindrance, a burden.”

See the totality of who I am. Meanwhile, over at satire site Squeaky Wheel, Linda wants to make clear that she's more than her disability. She's also a “huge bitch”:

“When people look at me, I don’t want them to see only my disability. I want them to see the totality of who I am — a delulu mega-bitch with a piss-poor attitude and the moral compass of a subway rat.”

That's all for this week! Let me know which animal best describes your moral compass,

Peter

Correction: an earlier version got Disability Advocacy Network Australia's (DANA) name wrong – sorry!

Roll on

Further reading. See the Debrief library for more on sign languages, analysis of Australia's NDIS, or disability news from Nepal.

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Acknowledgements

Thanks, as ever, to the individuals and organisations whose support makes the Debrief possible.