Dear Deafblind friends, colleagues, collaborators, supporters, and followers,
As we step into the New Year, we’re excited to share a profoundly inspiring life story with you. The upcoming interview might take a little time to read, but we promise it’s worth every moment.
This isn’t just a glimpse into someone’s life—it’s a testament to resilience, courage, and the unyielding spirit within the Deafblind community.
Wishing each of you a happy and prosperous New Year with a lot of joy, hope, and bravery!
A story about Diana and Sanja
This is a tale about two exceptional and bold women and their persistence that will, we certainly hope so, encourage you to enter the upcoming year with a positive attitude and optimism.
Diana, a young woman who became Deafblind due to an accident, and Sanja, current WFDB president, have never met in person, got closer physically, or felt the warmth of each other’s touch, but regardless of that, they managed to gather around the same goal. Through their email correspondence that you can read in the following paragraphs, these Deafblind women decided to share their motivation, resilience, and enthusiasm to point out that life is a rocky road worthwhile of all the challenges and efforts.
Let’s meet them!
Your story left a strong impression on my partner and me, and we are Deafblind persons ourselves. I can imagine you are not used to being publicly exposed, but I am more than certain that your amazing life story will inspire many other Deafblind persons.
Your name, Diana, is associated with Roman mythology where Diana is the goddess of hunt and nature. So, tell us what is there behind the name Diana, introduce yourself, and tell us a little bit more about yourself.
From the moment I became a Deafblind person, I started leading a more reclusive life. The reason for that is that I like to know what is happening with my life and I want to have at least some control over it. But if this interview helps at least one Deafblind person to keep up the good fight for her/himself or motivates someone not to give up on the things that matter to them – I will be happy.
First of all, I am a very social and jolly person. I like nature, and books and I have always been very creative. That creativity I tried to maintain even after acquiring my disability – I just adapted it to my new state and possibilities. Lately, I have been experimenting with clay. I can’t say that I got anywhere yet since I just began to learn how to work with it, but it helps me relax and fulfil my day.
Most of us, Deafblind persons, have gone through or are still going through a rough patch on the journey of accepting ourselves as Deafblind persons. How did your journey look like?
My journey was quite hard and challenging, but with time, I adapted and accepted my new way of life. After the accident, I woke up in the hospital – blind with both forearms amputated. At that point, I still had my hearing, but I lost it within a few months. According to the doctors, it was a result of a brain injury I acquired in the accident.
I remember the first days when I woke up every morning with panic attacks, every time I realized that this was my new reality. Another strike hit me when, during the rehabilitation process, I realized that a prosthesis for my forearms wouldn’t do much help due to my deafblindness.
But, little by little, through the rehabilitation process, counselling with a psychologist, and constant physical exercise, I adapted to the new state of things and accepted myself the way I am. I learned how to do things with my feet (that is something that I am still learning), so most of the everyday activities I can do on my own. I learned how to read Braille with my toes using a refreshable Braille display. That was my main means of communication for a long time – via texts before I started using communication systems based on touch. All in all, I managed to adapt, even though I have to be honest, I still experience some hard days, but I try to do my best, live as best as I can, and participate in life fully.
You work a lot in the field of adaptation and acceptance of Deafblind persons in mainstream society, not only nationally, but internationally as well. Could you explain how you adapted to deafblindness and what the process of self-acceptance looked like for you?
That is correct. I work proactively as a volunteer in the field of deafblindness, here in Croatia, but also in the EU and worldwide. It is much easier to cooperate with persons with similar disabilities. There is a certain level of understanding, feeling of belonging, and feeling of productive common efforts that cause real changes in the world – improvements for Deafblind persons globally.
I was born Deaf in a Deaf family, and I always had a different perspective of the world around me in comparison to my hearing peers. My mother tongue was Croatian sign language and Croatian spoken language I learned later in life.
The turbulent period of my life started during my adolescence because that is when I was diagnosed with atrophy of the optic nerve. For a Deaf person, sight means so much, so it took me a lot of time to accept that I would be losing my sight gradually, and that meant constant adaptations in everyday life. Those adaptations were a major problem for me because they took a lot of time and resources, but back in the day, there was no support for that. I, myself, had to think of new solutions for managing everyday activities – everything, from reading to going to groceries shopping. There were nights when I couldn’t sleep because I was burdened with thoughts of a dark future ahead of me. That was a very hard period. One of my Deaf friends suggested that I should go to Sweden because Deafblind persons there study and work with no obstacles.
And indeed, my departure to Sweden changed everything for me. There I learned what deafblindness is, and the ways to fulfil my dreams regardless of being a Deafblind person. I decided to learn as much as possible about deafblindness, meet many Deafblind persons, support them, cooperate with them, and so on.
When I came back to my home country Croatia, I established an association of Deafblind persons and we have been proactively working for 30 years now. Now I live my deafblindness in every aspect of my life! (smile).
Have you ever heard about deafblindness or met any Deafblind person before the accident?
Yes, I’ve heard about deafblindness before the accident, but I never met a Deafblind person. I thought to myself how it is impossible for someone who doesn’t hear and doesn’t see to lead a normal life. It was something I couldn’t even imagine or comprehend. That is caused by prejudice, lack of knowledge, and awareness related to deafblindness that is served by mainstream society. Something I felt on my skin now as a Deafblind person. If people knew more about deafblindness and Deafblind persons, life would be much easier because we would be more integrated and accepted.
Besides a dual sensory impairment – sight and hearing, all Deafblind persons share common obstacles that they face. Those obstacles include difficulties in access to information, communication, social interaction, and mobility. Besides that, many of us share feelings of loneliness and isolation. You mentioned the support of family and friends, but do you, regardless of that, sometimes feel lonely?
One of the worst consequences of deafblindness is that feeling of solitude that always exists, even if you’re surrounded by people who support you. Because of this specific isolation within social interactions and limited access to information, you crave that touch even more, that connection, that conversation, and some new insight. I think that we, as a society in general, are distancing from each other in the field of interaction through touch, especially after the COVID-19 pandemic.
In the pandemic period, I had to adapt significantly due to my disability. And I am very aware of how lack of touch can affect a person. That is why I believe it is crucial that we, as Deafblind persons, find hobbies and interests that we enjoy in, and that can facilitate meet-ups and connections with other persons with similar interests and/or disability.
You said that your partner is a Deafblind person as well. Can you describe what the life of a Deafblind couple looks like? Also, I would just like to add that many Deafblind persons fear they will be unable to find a partner and that they will spend their life in solitude. But you are a good example and a glimmer of hope that it doesn’t have to be like that.
For example, in Scandinavian countries, it is perfectly normal for a Deafblind person to find a partner, or love of their life, even among persons without disabilities. I know several who live happily in their partnerships/marriages and have children. Here, in Zagreb, there is one young Deafblind couple. They met as children on a summer vacation organized by our Deafblind association Dodir, and today, they are happily married.
My partner was Deaf when we met in Spain and he was an immense support to me in everyday life. But as sometimes things in life go south, we had discovered, unfortunately too late, that he is losing his sight due to diabetes. The preliminary diagnosis was – glaucoma. But regardless of the pharmacy therapy, the sight condition kept on getting worse. And all that exactly during the COVID-19 pandemic. Now, I am his support mainly, because he had a hard time accepting that he will gradually lose his sight and live as a diabetic too. It was a very hard period for both of us. But we survived. We indeed keep on fighting with challenges related to diabetes and we are learning new ways of communication like tactile sign language.
How do you communicate with your family and friends? Did they learn communication methods that suit you best?
All the dearest and closest persons in my life are very open to adapting due to my disability and they have learned communication methods that suit me best.
In the beginning, we communicated via text. They would write texts to me and I would read them using a refreshable Braille display. And since spoken language is my mother tongue, I would respond by talking. The problem with this type of communication is that I felt isolated from the interaction itself, I felt like I was reading the conversation and not being a part of it. That’s why I decided to start using communication based on touch instead of writing. So, we joined our efforts in searching and trying out different ways of communication based on touch, to see which one suits best to my current condition. Then, we found communication using the Lorm alphabet.
How do you communicate with persons without disabilities, and how with other Deafblind persons? Which communication methods of Deafblind persons have you encountered so far?
As I already stated, my mother tongue is Croatian sign language, but I managed to learn Croatian spoken language pretty well in speech and writing. But some grammar mistakes still pop up here and there (smile).
When I communicate with hearing persons, I use the Croatian spoken language. In communication with Deaf persons I use sign language, and with Deafblind persons, I use a communication method that enables direct communication without the middleman.
I consider myself lucky to have attended and finished my studies at the Faculty of Education and Rehabilitation Sciences, because I had a chance to learn something about diverse communication methods that Deafblind persons use, for example, Braille.
Adaptations of sign language for close range sign, visual frame sign, tracking, and tactile sign, I already mastered in Sweden.
I would like it if you could describe your adaptation of the Lorm alphabet to our readers and followers.
The Lorm alphabet is a tactile communication method that uses the palm as “a board” and where every letter has a specific movement that is inscribed in the palm. It is highly adaptable and it has already been adjusted/translated into several languages.
To me, it was of utter importance that it is adaptable to persons who cannot communicate using their palms, like me.
So, we tried to adapt the alphabet to be used on the upper arms and back, even on the cheek, but it wasn’t functioning well. For that reason, we decided to try the foot since it resembles a palm the most. That was very effective, on a bare foot as well as over a sock. All the signs were easier to adapt and understand, so that was a communication method I decided to go with.
The learning process involved constant repetition and practice of each sign. They would write it to me in Braille which sign is which letter and they would keep on repeating it on my foot until I remembered it. After that, we learned how to combine the letters.
So, today, communication using the Lorm alphabet is very fast and efficient, and I can partake in conversation at a somewhat normal speed, of course, under the condition that everyone in the conversation knows how to use the Lorm alphabet.
Is there a Deafblind association in Switzerland, the country you’re currently living in? If yes, did you reach out to them? Do you know any other Deafblind persons?
In Switzerland, there is a national association of Deafblind persons, and as well, some things related to Deafblind persons can be handled via the national association of Blind persons. I reached out and they assisted me mostly to acquire a psychologist, adequate therapy, and assistants.
Most of the Deafblind persons I know and I communicate with, I met online. There are different groups for Deafblind persons online, so it is much easier to find people with similar disabilities and interests/hobbies.
Do you get support within the Swiss institutional frame or do you mainly rely on the support of family and friends?
I get support from Swiss institutions, mostly in the form of getting adequate live assistance, two to three times a week, depending on my needs.
It is important to me that my assistant knows how to speak Croatian and that she is familiar with the Lorm alphabet. She helps me in everyday activities like grocery shopping, going to the bank, or the doctor’s office. She interprets the mail I get. Sometimes she prepares some reading materials for me, or she interprets the TV content for me, thus making my life easier and my day fuller. Since I live in the same house with my sister and her family, she also comes to assist me. Whenever I need something and I don’t have an assigned assistant at the moment, I can count on my sister as well.
I don’t know how many young Deafblind persons are there in Croatia, but do you offer some kind of special plans and programs for the integration of Deafblind youth into mainstream society?
The youth issue is one of the greatest ones, not only in our country but worldwide. Also, not only among persons with deafblindness but also among persons with other disabilities. There is a significant number of young Deafblind persons who do not identify themselves as Deafblind and, thus do not want to accept it, nor get active within organizations of Deafblind persons. That remains a great challenge for us and we still haven’t found the right approach and/or solution.
I was really impressed by your story. What is your greatest source of motivation in life? What gives you the energy to overcome the challenges that you face every day?
My main motivation is to live a life filled with all the things that I love and that make me happy. That is why I am overflown with energy. I do my best to live the life I want to live and disability is just one challenge that requires additional adaptation, but it is certainly not something that will stop me. Even when hard days come, I have the support of my closest ones who are always here for me.
I think that we, as Deafblind persons, encounter many prejudices and discrimination by persons without disabilities. How do you handle it? And what would you say to them to affect those wrong opinions and make them wonder?
I am a fighter by nature and I never give up. My war against prejudices is constant. Prejudices, sometimes surprisingly, always exist. Luckily, I can see that things have changed and have changed for the better in recent years. Conversations just like the one we’re having right now can help reduce prejudices. I always say that people should try walking in our shoes first and get to know us better. That helps a lot and for that reason, we organize activities and workshops like “Budi ja!” (transl. “Be me!”).
To conclude, which message would you like to send out to persons without disabilities and which to Deafblind persons?
To persons without disabilities, I would like to say that they should eliminate the prejudices they have regarding Deafblind persons and that they should not fear to approach Deafblind persons and try to communicate with them, even if they are not sure how.
And to Deafblind persons, I would like to say that they should not give up on the life they want to live! They should be brave, and try to adapt all their interests to their possibilities and fill their lives with the things they love. Live life to the fullest, because even if deafblindness is a severe disability, it is not the only thing that defines us as persons.
What does Dodir (transl. Touch) mean to you?
Dodir (transl. Touch) – that’s everything for me! My way of communication, my way of life, and 30 years of persistence and faith fighting the good fight to ensure that Deafblind persons acquire their place under the sun.
Like Helen Keller once said: “Alone we can do so little, together we can do so much.”
You already know that I proactively work on and promote the rights of persons with deafblindness on national, European, and world levels. I would like for you to join our movement, of course, whenever you feel ready for it. I am certain that we can, by joining our forces, create a better world for all the Deafblind!