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Black and white pictures of Khairani Barokka and Amy Zayed

Disability and/in translation: The right to self-describe

In cooperation with the Goethe-Institutes in North-Western Europe, poco.lit. hosted an online discussion about disability and/in translation. Dr. Khairani Barokka, a disabled Minang-Javanese writer and artist from Jakarta, and Amy Zayed, a German-Egyptian journalist, shared valuable insights. Lisa Nechutnys who currently supports the macht.sprache. translation project chaired the discussion. In the following you can find an overview of the discussion spanning particular terms in relation to disability, pragmatic suggestions for translators and the connection between disability justice and anti-colonialism.

Disabled people are the largest minority in the world and this is a fact, even if not all disabled people report their disabilities. Disability is never one thing, especially because within the disabled community other power differentials exist as well. But Khairani Barokka (Okka) explains that there are still connecting aspects: “Especially within disabled and chronically ill communities, we are constantly translating what it is to be human. And you cannot possibly understand unless you are literally in another person’s body.” But it is possible for everyone to gain more awareness about the different conditions that shape people’s lives.

This awareness may start with or coincide with linguistic shifts. Amy Zayed, however, argues that societies also need a different understanding of disability. When asked about languages that are structured by ability norms, such as metaphors or expressions of movement, Amy is not convinced that changing these should be people’s highest priority. The German language uses “gehen” (walking) or “sehen” (seeing, watching) in many expressions and they might exclude the experience of people in wheelchairs or blind people.  As a blind person, Amy knows this question well. “It’s a valid question. But when you’re blind, you are not necessarily completely blind. Blindness is when you see below 2%. Usually, we have an idea of what seeing is. Therefore, I would never say ‘have you heard this movie?’ I would also say, I watched this movie. Obviously, I watched it with the little sight I have.” But there are expressions that one should consider to avoid. Okka says: “I hate it when people use ‘blind spot’ as a metaphor. Blindness is often used to express something negative. With race something similar happens. If something is Black, it’s usually seen as negative in a lot of cultures.” Many factors go into how words are perceived, context, tone, hierarchy and forms of respect, but not using an identity marker as something negative could probably become a rule of thumb.

Because of the diversity within the disabled community and against cripnormativity – an understanding of a single way to be crip – the terminology around disability can vary. Okka emphasizes, “My number one thing that I want people to take away is that everyone should have the right to self-describe. Sometimes that means that someone will use a word for perhaps a condition that I have that I don’t necessarily agree with. But I don’t know their life story. I don’t know what has brought them to that sort of thinking.” The two speakers provide a perfect example: while Amy prefers person-first language (person with disability), Okka chooses the identity-first option for herself (disabled person). One argument for her is that in the social context the opposite of disabled would be enabled and not unable. This emphasizes the role of society in disabling people. But Okka and Amy both agree that disabled and disability are perfectly acceptable terms. With her Twitter Hashtag #TactfulnessIsEmotionalCancer, Amy campaigned for saying things as they are. She says, “as a blind person, all I have is language. I wish people would communicate more with words.”  Neither Okka nor Amy want to be called people with special needs. Amy says, “we are being disabled by society.”

Pragmatic Translation Advice

The event even offered some pragmatic advice for translators in terms of naming marginalized groups. This is a particularly difficult task when translators want to respect everybody’s right to self-identify and when there is no consensus on what a sensitive approach might be. Both, Okka and Amy have a simple answer: “Just ask us, we have agency and we have voices!” But translators – or anyone really – should also respect disabled people’s choice to refuse an answer. Many deaf and disabled people experience having to provide deeply personal experiences without consent.

If translators work with a text, in which a disabled character appears and they can’t ask that character about their preferred terminology, it is important to consider what type of text they are dealing with – whether it’s fiction, a legal text, an essay and how the author wrote it. Amy points out, “if the person wrote disabled, you better don’t make special needs out of it.” Okka shares that she has worked as a sensitivity reader for a colleague. Another option would be to contact the author of the original text to discuss the terminology and the intention behind it.

Disability justice as anti-colonial praxis

Ableism is part of capitalist colonialism. It cannot be discussed in isolation, which Amy underlines by pointing out that she is an Egyptian woman who grew up in a small town in Germany, who happens to be blind. Growing up, especially white Germans asked her again and again “where are you from?” and “why are you blind?” These questions are part of a practice called othering. While these questions still sometimes annoy her – depending on the interrogator’s intention – Amy says that, nowadays, she’d rather have the dialog than the silence.

According to Okka, such dialogs should include reflections of the establishment of norms and notions of difference. She explains that in Javanese culture, disabled gods exist. But when Dutch people started to colonize Indonesia, everything that was “different” had to be eliminated – colonial ideas enforced that deaf people, blind people, little people, should be eliminated or “cured”. So in Indonesia, colonization was the cause of so much ableism, which is why Okka states, “for me, reclaiming disability is part of anti-colonialism.”

The conversation with Okka and Amy can be understood as a reminder that we should continually question our assumptions. When it comes to translation, a gut feeling might be misleading and additional research or an expert’s opinion will most likely improve any kind of work.