More than meets the eye: Rethinking deafblindness with Jex Truran-Lakaev

What kind of employment options are there for deafblind people? How well or badly does the wider world accommodate deafblind people’s needs?

Employment opportunities for deafblind people are not one-size-fits-all; they vary depending on the individual’s abilities, preferences, and access to support. With the right reasonable adjustments – such as adaptive technology, communication support, flexible hours, and accessible environments – many deafblind individuals are fully capable of contributing meaningfully to a wide range of roles.

Unfortunately, a significant barrier remains: a lack of understanding or willingness within the broader community and workplace environments. Many employers are unsure how to make these adjustments or are simply unwilling to invest the time or resources to learn. As a result, deafblind individuals are often overlooked, not because they lack ability, but because society fails to recognise or accommodate their potential.

This challenge is part of a broader issue. We still live in a society where people with disabilities are undervalued. Their talents, creativity, resilience and lived experience are often not seen as assets. Instead, outdated views and ableist assumptions persist, limiting opportunities before a fair chance is even given.

What’s needed is a cultural shift – one where inclusion is not seen as charity, but as a benefit to everyone. Creating truly inclusive workplaces unlocks innovation, diversity of thought, and stronger communities.

People who are deafblind or have other disabilities are often underestimated, limited by systems that don’t adapt, and denied the chance to show what they can do in their own way.

Respect and choice matter. Deafblind people – like anyone – should have control over their own goals, careers and paths. It’s not right when others decide for them what’s “too hard” or “not safe” without even giving them a chance to prove themselves.

It’s about adapting the system, not the person. Instead of trying to force deafblind people to follow the same exact steps as everyone else, the system should work with them to find new ways – including new tools, supports, or training methods – that still get the job done safely and effectively.

How many deafblind people are there in the Hunter region? And in Australia?

The quick answer is that accurately capturing data on individuals with dual sensory loss or impairment (such as deafblindness) is extremely complex for many reasons. So, there are lots of statistics out there and I am not sure which ones could be accurate. Deafblindness is low-incidence disability in the scheme of things, and unfortunately this is one of the reasons it is often underfunded, under-recognised and under-researched. Yet having said that, people with deafblindness are one of the most isolated and marginalised groups of people within the disability sector.

The issues with collecting accurate figures include:

• Variability in data collection systems: Different countries, regions and institutions use different criteria, definitions and methods to collect data. This leads to inconsistent or incomplete datasets, making reliable cross-comparison or aggregation nearly impossible.
• Self-identification and diagnosis: Many individuals don’t identify as having dual sensory loss because of stigma, lack of awareness, or the fact that their impairments are mild, gradual, or acquired later in life. Others are misdiagnosed or undiagnosed entirely.
• People in closed systems: Individuals in group homes, long-term care facilities, prisons or institutional settings may not be properly assessed for dual sensory loss – particularly if they have co-occurring disabilities. Their needs might be "folded in" under broader categories, effectively erasing the presence of dual sensory impairment from formal statistics.
• Intersection with other disabilities: Dual sensory loss often coexists with other physical, cognitive or developmental disabilities, making it harder to isolate and identify as a distinct condition. Systems may prioritize the "primary" diagnosis, leaving dual sensory needs under-addressed or unrecognised.

If you could change one thing to give deafblind people more control of their lives, what would it be?

Universal access to trained, qualified and consistent communication support – any time and anywhere.

Here’s why:

• Communication is freedom. Without access to people who can communicate in the deafblind person’s preferred method (like tactile signing, braille or speech-to-text), daily choices, big and small, are limited or even taken away.
• Many deafblind people rely on interpreters, support workers or intervenors, but not everyone has regular access to them, especially in rural areas or because of funding limitations.
• With consistent, trained communication support, deafblind individuals can navigate medical appointments, education, work, travel, and personal relationships more independently and confidently.
• It’s not just about help: it’s about equity and having control over your own life decisions.

What or who inspires you?

Who inspires me? I do. I have the power to live with everything life brings. My experiences, my family and community, my education – and most of all, accepting myself. I live with very limited sight and no sound, but I’ve found other ways to achieve the goals I chose for myself.

People should never treat deafblind individuals like they’re less than human. We are not little dogs to be pitied or controlled. We are people, with our own minds, strength and purpose.

Jex’s first language is Auslan, so this interview was conducted via Auslan to English. The Community Advocate would like to thank Justine Lorenz at the Hunter Deafblind Project for her assistance.