People with disabilities face additional challenges during health emergencies such as pandemics, extreme weather events and conflict. Deaf people in Ukraine witnessing the ongoing war are no different. While Ukrainians live with frequent air raid sirens, an estimated 36 000 citizens who cannot hear depend on text alerts. As mobile alerts cannot get through unless networks are stable, too often bombs and missiles come without warning.

The World Federation of the Deaf estimates that by June 2022 over 5000 d/Deaf* people had fled the country. Tetiana Kryvko and her colleagues at the Ukrainian Society of the Deaf are among the many more who have, so far, stayed.

Tetiana was born into a Deaf family in western Ukraine. Despite attempts to preserve her hearing, it deteriorated when she was 5 years old. Tetiana’s grandmother taught her to read and write. Now she credits her wide and nuanced vocabulary to the many hours spent reading her favourite books during childhood.

Using a combination of Ukrainian Sign Language and a hearing aid, Tetiana can communicate effectively with both the hearing and d/Deaf communities. As the First Deputy Chairperson of the Ukrainian Society of the Deaf, she acts as a mediator between those two worlds. The Society is dedicated to improving the lives of d/Deaf and hard-of-hearing citizens across the country, providing a broad range of services from sign language interpretation to employment assistance. “It would be quicker to list what the Society does not do,” Tetiana says, “Our policy is that all deaf people should get the help they need.”

Navigating war in silence

The war in Ukraine has had a devastating impact on d/Deaf people’s well-being and human rights. Accessing reliable information has become more difficult, and, as Tetiana says, nearly all gains made in previous years came to a standstill. “Deaf people ended up in dire conditions,” she recalls the days following the Russian Federation’s full-scale invasion of Ukraine on 24 February 2022. “They didn’t know what to do. There was footage of explosions, the President was speaking on TV, but it was hard to understand what was going on.”

The Society translates President Volodymyr Zelenskyy’s addresses into sign language and operates a video hotline for consultations to provide much-needed information to d/Deaf and hard-of-hearing people. But with limited funding and strained staff, the teams are working at capacity. “Our interpreters were under fire just like everyone else. Still, they worked day and night in those first weeks,” Tetiana says.

Over a year into the war, there are still no protocols for safe evacuation of d/Deaf people in emergencies. On 14 January 2023 a missile struck an apartment block in the eastern city of Dnipropetrovsk. On the next day, emergency services rescued a young Deaf woman from the debris. She could not call for help but managed to let her mother know she was alive via the smartwatch on her wrist.

“Deaf people should have some kind of guidelines for action in emergencies,” Tetiana says. “Even when someone is trying to help, it can be difficult to know if the person can be trusted.” After 20 hours under the rubble and suffering severe hypothermia, the Deaf woman was taken to the hospital, where she made a full recovery. Sadly, she lost her husband and their 1-year-old son in the missile strike.

Inclusive integration

“Inclusion of d/Deaf people is a slow and, at times, frustrating process,” Tetiana says. Thanks to the tireless efforts of the Ukrainian Society of the Deaf and of inspiring figures such as disability rights activist Tetiana Barantsova, the Office of the President of Ukraine is developing an initiative under the National Barrier-Free Strategy that would require health-care facilities to provide sign language interpretation to everyone who requests it, instead of d/Deaf people having to organize this service themselves.

Tetiana explains how the rule that renders people with a hearing disability ineligible for a driving licence in Ukraine is, from her standpoint, outdated and discriminatory. “Deaf people have always been able to drive. In other countries they aren’t merely allowed behind the wheel, they can even have jobs that involve driving – for example, they can work as lorry drivers. So why can’t we drive in Ukraine?” Because of this rule, many d/Deaf citizens find themselves facing additional barriers to safe evacuation.

“Deaf people must be able to exercise their rights independently, without relying on others,” Tetiana reiterates. “Too often we don’t see the individual behind the interpreter or assistant. We don’t know about their needs and only relate to them through a third party.”

Nothing about us without us

Disability inclusion is at the heart of the WHO European Framework for action to achieve the highest attainable standard of health for persons with disabilities 2022–2030. The Framework calls on Member States to routinely provide information in accessible formats in health services and public health broadcasts, and further aims to ensure that persons with disabilities are fully protected during health emergencies.

Above all, Tetiana hopes to see d/Deaf people being involved in the decision-making process of any initiatives that concern them, especially when it comes to access to good-quality, timely and affordable health care. According to the Ukrainian Society of the Deaf, d/Deaf persons currently do not receive sufficient information to make important health decisions.

Rehabilitation must also be an integral part of service provision, advocates urge. When Tetiana first wore a hearing aid, it amplified everything: loud bangs, drills, motorcycle engines. Eventually she got used to it. Tetiana highlights that d/Deaf persons and their families must understand the important role of rehabilitation and assistive technology.

“Inadequate rehabilitation can result in unjustified trauma for a child with hearing loss, for example,” Tetiana concludes. “Of course, cochlear implants and hearing aids should be available. More importantly, every deaf person should make their own decision about the health-care services they may need, and this requires reliable and accessible information.”

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* Deaf with a capital D indicates a cultural identity for people with hearing loss. Their primary form of communication is often a sign language, they may be actively engaged with the Deaf community and identify as a member of a cultural/linguistic minority. Deaf people may view deafness as a difference rather than a disability.

The lowercase “deaf” refers to the physical condition of having hearing loss. People who use lowercase ‘d’ do not always have a strong connection to the Deaf community and may prefer to communicate with speech.

“d/Deaf” is a widely accepted term to include both of those identities.