Have you ever tried to have a conversation in complete darkness, with headphones blocking all sound? Now imagine that this is your everyday life. For many people who are deafblind, this is their reality a unique and profound experience that goes far beyond what we usually understand as a “disability.”
For a long time, deafblindness was treated as a single condition, almost like a closed box: either a person is deafblind, or they’re not. But the truth is much more complex, and much more human.
In 1994, I was just a curious person who had completed a Sign Language course offered by a Baptist church. The following year, I took another course at ADEFAV, in São Paulo (Brazil), and that’s where I first saw a group of children who were deafblind. That moment changed my life.
I didn’t dive into this world right away. I worked as a sign language interpreter, participated in national events, with the help of two students from the university’s engineering department, I even developed a prototype of a wearable vest with sensors (which worked for a glorious 3 minutes before it burned out!). Years later, I completed a master’s degree focused on sensory substitution technologies for people who are deafblind.
It was just nine days before my thesis defense that a question suddenly emerged: Who are deafblind people, really?
Desperate as the defense day approached, I used my last bits of mental clarity to research references on the topic. To my dismay, the so-called “contemporary” information wasn’t much different from research published 40 years earlier.
Pressed for time, I started questioning everything, and realized that there wasn’t just one kind of deafblindness. In a quick search, I identified 52 different profiles at the time. The day of the defense arrived, and that academic cycle came to a close.
Five years passed. I moved to Europe to improve my English in preparation for a PhD. During that time, new reflections and insights about the subject began to emerge. I revisited the variables and reevaluated the typology I had once presented in my master’s degree.
After reanalyzing the previously identified key factors, I reached a new proposal: a model that recognizes 2,256 distinct profiles of deafblindness.
That’s right: 2,256 different ways of being deafblind. Over two thousand unique ways of experiencing this condition.
This number comes from the combination of three factors:
1 – Condition at birth:
Was the person born without any disability? Born deaf? Born blind? Born deafblind?
2 – When the disability was acquired:
Before learning to speak? In early childhood? During adolescence? In young adulthood? During working life? After age 60?
3 – Degree of disability:
Is the deafness and/or blindness mild, moderate, severe, or profound?
This new classification isn’t just about statistics. It’s a way of looking more carefully and compassionately at each person, their experiences, their challenges, and their potential.
Language beyond the senses
Language is one of the great bridges that connect us to the world. And even for those who can’t see or hear, language still happens, in a different way, in a different time, through different senses.
People who are deafblind go through different stages of language development, from babbling and gestures in infancy to complex expressions in adulthood. To better understand this, I adapted the linguistic journey into 10 stages, from the pre-linguistic phase (0 to 12 months) to the senior phase (60+ years). Each stage brings new ways of expressing oneself and building meaning.
When a person loses vision or hearing at different moments in life, their experience with language also changes. That’s why it’s so important to respect each person’s timing and path.
So, what changes?
When I recognize that there are 2,256 possible profiles of deafblindness, I am saying there is no one-size-fits-all solution. Each person needs a specific approach, in school, at work, in communication, in life.
This model helps us think about more effective technologies, more humane public policies, and truly inclusive educational practices.
It means creating spaces where deafblind people aren’t just included “because it’s the right thing to do,” but because they have so much to contribute to the world, if the world is willing to listen, even without sound, and see, even without light.
True inclusion isn’t just about opening the door. It’s about seeing who’s walking in, asking their name, hearing their story, and adapting the space so they can stay – and thrive.
Deafblindness invites us to rethink what communication means, what language means, what presence means. It forces us to slow down, to listen through touch, and to perceive through the heart.
And above all, it teaches us that every person is unique — and deserves to be seen as such.
Download or Read more here:
BATISTA, D. J. (2025). Typology of Deafblindness: A Model Based on Onset, Development, and Impairment. Zenodo. https://doi.org/10.5281/zenodo.15950582