This resource presents the experience of a person with deafblindness and how they perceive and navigate the world through mechanisms of adaptation and compensation. It describes sensory reference points, strategies for autonomy, and the role of family support in everyday life, as well as the importance of early assessment, an individualized communication plan, assistive technologies, and community support in promoting independence and social inclusion for people with deafblindness.

Words by Oana Ene, Special Education Teacher, Psychotherapist and President of Beyond Senses Association.

How do we, people with deafblindness, perceive the world?

The life of people with deafblindness is an experience that involves both total or partial loss of vision and hearing. And this factor significantly influences the filter through which we perceive reality. When the two senses are affected, a phenomenon called neuroplasticity occurs in the brain. And the brain areas that normally process information from the environment, through sight and hearing, now process information coming through the olfactory, kinaesthetic and tactile senses but capitalise on any visual or auditory signal that can be perceived. The brain uses all the resources at its disposal to create a map of reality that is much more complex than it seems at first glance. That’s why I believe that no two people with deafblindness are the same. Because the mechanisms of adaptation, operation and compensation are so complex.

Adaptation, environmental perception and everyday life

In everyday life, all these mechanisms of compensation and adaptation help us navigate through the external environment. In my case, familiar places and familiar routes do not require me too much because I have already created my own reference points. My reference points, since I have some remaining vision and hearing, are light signals, a house or a fence that has a more strident colour, or the sound of the traffic light where they exist, the vibrations that the tram gives when it approaches, the smell of cafes or restaurants that indicate that I am approaching my destination. But when it’s dark outside or the place is completely unknown, I prefer to take a ride-share car. That makes me feel safe. But when I go on trips or longer distances, in very crowded places, I prefer someone to accompany me, I feel much safer. And most of the time I go with my husband, he knows exactly all the information and descriptions I need to familiarise myself with the environment. When I am at home, the most important thing for me is that things are not moved from their place because after that they are difficult to find and I prefer to save time.

When it comes to household chores, I rely a lot on the sense of touch, for example when I vacuum I do it barefoot, so I can feel if there are any signs or not. When I wipe the dust, with one hand I hold the cloth and wipe the dust and with the other hand I check if I have cleaned everywhere. I think my great luck is my mother, because she didn’t accept that I couldn’t do things to be independent and so she developed some strategies so that I could do everything, but in my own way. Today I am so independent because of it.

Challenges and support in the lives of people with deafblindness

The challenges for us, people with deafblindness, are obvious and require a lot of energy and concentration, in unfamiliar environments, in new social interactions, in shopping centres or in very tiring and crowded places. But coping mechanisms, support from others, assistive technologies, learning programs, community, mutual support, and friends make life a gift.

For those who want to be by our side and offer us support, I want to mention some strategies that make a difference. 

Support strategies

The first stage is the complex assessment. This assessment, which is recommended to be done as early as possible, has several branches, namely:

• Sensory evaluation, how much the person sees and hears or, in happy, early cases, the child.
• Evaluating the right type of communication can be tactile, sign language, Braille or symbolic communication.
• Assessment of autonomy, mobility, fine and gross motor skills as well as daily activities performed.
• Emotional assessment, if the person with deafblindness feels isolated, or feels anxiety, the level of self-esteem can also be assessed.

The next step is to establish the individual communication plan. Because the specifics of this disability are so complex, communication plays a fundamental role in the intervention process.

The process continues with the establishment of a specialised support person, who will interpret for the person with deafblindness what happens in the external environment, facilitates social relationships, builds autonomy gradually for the child or person with deafblindness. Unfortunately, this right is completely lacking in Romania. And the role of this specialist is most often taken by one of the parents or by someone in the family, with the mention that those in the family unfortunately do not know the individual form of language of people with deafblindness and therefore this role is partially fulfilled.

Predictable environment and community engagement

Another step is to establish a predictable and familiar environment. Just as I mentioned above in my example, it is recommended that objects have fixed places where we can easily find them.  Routines must be clear and predictable, without sudden changes and with possible tactile or light descriptions of the space.

Family and community support also ensure a safe and supportive ecosystem. A wonderful example we experienced was the one offered by Sense International Romania, where support groups were created for us, people with deafblindness as well as for parents. They have carried out projects to educate the community about the impact that deafblindness has on our lives. The projects of the organisation and the visits carried out with the sensory tent in schools, various institutions, companies but also in public places, bring a real impact on society. At the same time, the direct involvement in establishing partnerships with 25 schools in Romania but also with state institutions where, being supported by them, we learned to fight for our rights.

Assistive technologies and support tools

Learning and using information and assistive technologies is another key point. These technologies improve our lives and, more than that, facilitate our direct access to it. I would like to mention that personally I would not have been here today if I had not had access to these technologies, hearing aids, glasses. The laptop that has different technologies adapted especially for me, the phone that has enlarged writing and many others that are very helpful to me. Different platforms where I can listen directly to my books in the hearing aid, the Global Resource Hub for Deafblindness where I found valuable information and satisfied my curiosity about what the resources on deafblindness available in other countries look like.  Guidance systems such as the cane or talking traffic light are also useful.

Life beyond the senses

All these support tools that I have mentioned make a difference in the life of a person with deafblindness and in the quality of life, in social integration or in access to profession and independent living.

The world is not just what is seen or heard. The world experienced by us, people with deafblindness, can be a world beyond the senses through our own way of living and feeling. For us, this world is built through support, relationships, meaning and other ways and methods of accessing experience.

Bibliography

• If you can see it, you can support it (Nordic model).
• Guidelines on Best Practice for Persons Living with Deafblindness
• Publications of Deafblind International
• Publications of CBM (Christoffel-Blindenmission) intervention and development guides.
• Miles, B. & Riggio, M.  Deafblindness: Educational Service Guidelines.
• McInnes, J.M.  A Guide to Planning and Support for Persons with Deafblindness.
• Rowland, C.  Communication Strategies for Children with Sensory Disabilities.
• Hatlen, P.  Orientation and Mobility for Individuals with Dual Sensory Loss.
• Obretenova S., et al. (2010).
• Neuroplasticity Associated with Tactile Language Communication in a Deaf-Blind Subject.
• Frontiers in Human Neuroscience. fMRI)
• https://pmc.ncbi.nlm.nih.gov/articles/PMC2805429/
• Villwock A., et al. (2022).
• Somatosensory processing in deaf and deafblind individuals: Determinants for neuroplasticity.
• Frontiers in Psychology.
• https://www.frontiersin.org/articles/10.3389/fpsyg.2022.938842/full