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deafblindness

We have to move forward and leave the adversities behind

Alexandra is a 23 years old young woman with deafblindness.

She was born prematurely at 7 months, and that's when her fightbegan. 

"They placed her in my arms and told me: your child will not hear, will not walk, will not speak, will have paralysis either in one hand or on one leg. I was scared! Then I told myself that my daughter has to be strong. I brought her home and put her on the bed; I was even afraid to lift her up. It was very difficult in the beginning!", her mother recalls.

Later on, her mother noticed that the baby didn't make many sounds, so she decided to take her for a thorough examination. This was followed by many therapies and treatments. 

"It was very difficult in the beginning, until she grew a bit, but we got through it. Little by little, day by day. With check-ups, visits, massage, physiotherapy, injections, and she kept progressing", her mother adds.

At the age of 4, Alexandra said "mom" for the first time, and at 6,she took her first steps. Little by little, Alexandra became more independent, and now she communicates verbally.

The group helps me communicate better

Alexandra learned about Sense International Romania (SIR) when she was a pupil, at school. She was curious to know more and joined the group of young people with deafblindness that the organization works with. "I was very curious to see how things work there. I spent days with friends who have deafblindness, and it was very interesting", she remembers.

She participated in several trips organized by SIR and has fond memories from the mountains or from the seaside, where she rode the cable car and met other young people with deafblindness, just like her, from various cities in the country. 

"The group helps me to be more open, and communicate better," Alexandra says.

We have to move forward!

Her mother was also happy when she found out what deafblindness exactly meant and that she could meet other children and parents going through similar situations. 

"I was happy when I learned about deafblindness; I realized that there are other children like her. I wanted to meet them; I thought maybe they would become friends with my child! I wanted to share with them what I had learned and to have the opportunity to communicate with them", Alexandra's mother emphasizes.

It has been a long journey for the two of them, mother and daughter, and it continues with new challenges. For the past few months, Alexandra has been working full-time at the same factory as her mother. Working eight hours a day in three different shifts is tiring for her, but she enjoys it and is proud that she can do it. She now wants to save money for driving school and, if possible, even have a car. 

Her mother would like to encourage other parents with similar stories: "They should start somewhere, even if it's difficult! We have to move forward, leave the difficulties behind a bit for them! We can't leave them behind! You can be anyone, you deserve to be helped!"

Even if you can’t see or hear, you can do many things

Mădălina is a 24 year old young woman who is studying clinical psychology. 

She has been a fighter from the first day of her life. Doctors didn't give her many chances when she was born, and even now they are sometimes amazed when they see her medical history.

Mădălina has deafblindness; she wears a hearing aid and glasses, but for a long time, she considered herself a person with a hearing impairment.

"I have had a visual impairment since birth, and at the age of 6, after a treatment, my mother discovered that I also have a hearing loss, which was confirmed by many doctors. For a long time, I considered myself a person with a hearing impairment until Mr. Vasile Adamescu, a person with deafblindness, published a book that I really wanted to read."

According to her, learning the term "deafblindness" represented an opportunity.

"I understood myself better when I found out that I have both impairments and the subsequent decision to leave the school for the deaf and go to college. The simple curiosity about deafblindness has brought me many beautiful things!", Mădălina recalls.

Meeting Vasile Adamescu

She met Mr. Adamescu at an event organized by the Sense International Romania (SIR) and she remembers that moment as a major event that greatly contributed to her story.

"He managed to overturn things in my mind and soul. I thought that if he succeeded, I could too! He was an inspiration and proof that even if you can't see or hear, you can do much more; you are beyond what disability implies. There is also a principle in psychopedagogy that says disability is something you have, but society imposes the handicap on you. I think that's what it was; he transformed my handicap into a disability", adds the young woman.

She believes that her encounter with SIR and Mr. Adamescu came as an answer to the questions she had.

"His story was the answer that came after many, many years! It matters a lot what you plant in your garden, what seeds you sow, because at some point, they will sprout, even if it takes a long time for these seeds to grow", says Mădălina.

In the 8 years since she started attending SIR activities, she has planted many seeds: first as a participant, then as a volunteer, and now as part of the team.

The job offer came at a time when she felt disoriented. After graduating from college, she took a year off to think about what she wanted to do next, but looking back, she believes that break helped her get to know herself better.

"The offer was like a message telling me: Don't worry, things will happen as they should! I think these moments of disorientation are necessary in life because they help us find our way back, the path we need, actually. And that's how it was with SIR, in the end," emphasizes Mădălina.

One of the things she is currently practicing in SIR projects is patience, along with many other things that contribute to the person she is today.

"I think everything has come together, all the things I have learned. The fact that I stayed, that there was collaboration between SIR and my school, the fact that I was invited to be part of projects. I have met many people here over time, people I highly admire. Everything comes with challenges and teaches me things."

"Move forward because you've already been backward"

At SIR, Mădălina coordinates the group of young people with deafblindness, alongside another colleague who has the same disability. She interprets in sign language whenever necessary, and she tells new people about deafblindness and their rights. She strongly advocates for people with disabilities to know their rights because there were situations where she or other persons were treated unfairly. Now she helps others discover their rights and is delighted every time she can help.

Mădălina says she has faced many difficulties and has fought for inclusive education because she strongly believes in the power of education. She has learned not to give up easily when something doesn't work out at first and to keep moving forward, being careful about who she allows into her garden.

For the future, she wants to have her own psychotherapy practice, where she can support those in need and conduct research on the topic of disability.

What can you do, according to Mădălina, despite having a disability? "You can dream, laugh, be positive, and move forward because you've already been backward!"

 

When hands become eyes and ears

Between September 14th and September 17th, we organized a face-to-face training session in Predeal with experienced Romanian Sign Language interpreters. Over the course of four days, we explored elements related to communication methods for individuals with deafblindness, orientation and mobility aspects, as well as practical recommendations for interpreting for individuals with deafblindness.
This session is part of the Deafblindness Initiation Course for Romanian Sign Language interpreters, which runs from September 4th to October 16th, 2023, as part of the project the Voice of People with Deafblindness in Romania.

Communication, Orientation, Mobility

The theme of the first day of the course was communication for people with deafblindness. Together with the participants, we discussed communication systems based on sign language, communication systems based on verbal language (such as Block alphabets, Braille, Moon), as well as hand configuration-based alphabets and location-based alphabets.

Participants took on the challenge of role-playing various life situations. In a doctor's office, at the Disability Evaluation Commission, or at the Civil Registry, interpreters acted as the eyes and ears of individuals with deafblindness, providing support and gaining a better understanding of the challenges they face in their daily lives.

In the following day we focused on recommendations regarding the quality of interpretation for individuals with deafblindness, considering the physical context and interpretation organization. Interpreters shared their valuable experiences, and we discussed elements related to the interpreter's appearance, the communication environment, and interpreting in a team.

The second part of the day, dedicated to orientation and mobility, brought a new challenge. Blindfolded, with reduced hearing, and using the white-red cane, the symbol of deafblindness, interpreters were guided on a short route to experience the world from the perspective of a person with this double disability. After the exercise, they shared their emotions with us, transitioning from fear and uncertainty to confidence, curiosity, and courage.

"Together, we can bring light into the lives of people with deafblindness"

After spending several days learning from each other and building connections, we concluded the course with many ideas about what we can do together to support people with deafblindness and the desire to continue this journey together. We thank all the participants for their presence and involvement!

"The presence of so many people gathered together, the connections we've made, are a valuable treasure to me. So little is known about deafblindness; only together can we change mindsets and bring light into the lives of people with deafblindness!

The role of an interpreter for individuals with deafblindness is extremely demanding and not easy for an LSR interpreter. Being an LSR interpreter is the joy of my life, being an interpreter for individuals with deafblindness is the challenge of my life! Thank you for everything I received in this course, and I eagerly wait what comes next!" - Angela M.

"I am overjoyed by the unique opportunity you gave me! Here, I have learned many important and useful things. During an exercise, I realized that I can once again enjoy small things, such as applauding in my hands for an accomplishment. But there are so many challenges beyond our daily lives! Thank you for welcoming me into your family! I sincerely hope that this beginning has no end!" - Mihaela D.

"I greatly appreciate the effort and willingness of the trainers to provide me with valuable information about people with deafblindness. I realise that I am richer emotionally and intellectually because I have borrowed from the experiences of the group, mature and experienced people. I am confident that the information will be useful in my work." - Diana S.

The Voice of people with Deafblindness in Romania is implemented by the Foundation Sense International Romania in partnership with Sense International UK, with the financial support of Active Citizens Fund Romania, programme funded by Iceland, Liechtenstein and Norway through the EEA Grants Grants 2014 -2021. The content of this materiale does not necessarily reflect the official position of the EEA and Norway Grants 2014-2021; for more information visit www.eeagrants.org. More details about Active Citizens Fund Romania are available at www.activecitizensfund.ro.

Working together for a green, competitive and inclusive Europe

“It’s good to show how a person with deafblindness is, we are equal to others”

"My name is Crina, I am 39 years old and I am from Cluj, a city in Western Romania". Crina smiles and shows us the sign she has chosen for her name: her freckles. 

Crina communicates only through signs, she was born deaf and wears glasses. She grew up in a united family, with both parents being deaf, brothers and sisters who can hear and another sister like her, with deafblindness.

For a long time, she didn’t consider herself a person with deafblindness, only deaf. She learned the secrets of tailoring in highschool, then worked in a tailor shop for 9 years. After that, she took on another job in a supermarket, where she arranged merchandise on shelves, all experiences from which she learned a lot. 

Her mother, Elena, told her about deafblindness for the first time. 

“In 2006-2007, my mother went to Finland, where she had a friend. She attended activities with a group of people with deafblindness. She liked it there and discovered new things. When she returned home to Romania, she wanted to find out more about deafblindness and learned about the Sense International Romania. She was impressed", Crina recalls.

Her mother became a volunteer for SIR, getting involved in many activities and representing the parents of children with deafblindness. A curious nature, Crina accompanied her to meetings, met new people, and gained a better understanding of what deafblindness meant.

"That's how I discovered that I am also a person with deafblindness, and that's ok," says Crina smiling. 

Her mother taught her sign language, and this way they were able to communicate very well.

"She was very interested in being close to people. We used to communicate both hand on hand and through signs. Even though she didn’t see well, she always said it was possible. I felt a very important connection with her through communication. Even when it was dark, we could communicate”, adds the young woman. 

From her mother, she inherited a passion for communication, as well as gentleness and patience, which she now applies in her activities with young people and children with deafblindness in SIR's projects.

From participant, to employee

In the spring of 2022, Crina accepted the opportunity to join the foundation's team and continue her mother's work, who is no longer with us. "It was wonderful to meet new people, to feel connected, to feel love. I accepted to work at SIR not necessarily for myself but for those around me", says Crina.

She now coordinates the group of young people with deafblindness, together with another colleague who is also deafblind. She keeps in touch with the members of the group, facilitates the online meetings and explains through signs for those who don’t communicate verbally.

She also attended several trips with the group of young people with deafblindness. Initially, she felt uncomfortable speaking in front of them, but now she likes to share her experiences with the others.

"It’s good to not hide but to show what it means to be a person with deafblindness, what one can do, what talents we have, the fact that we are equal to other people, that we can do various activities. I hope the foundation will develop in the future", says Crina.

During activities with the young people with deafblindness in the group, she noticed that some individuals understand more easily, while for others it’s more difficult. In time she learned to adapt to each individual.

"If someone is new, I tell them that deafblindness is a hearing and vision impairment: poor vision, poor hearing. Some are deaf, wear hearing aids, wear glasses; there are several categories of deafblindness, I give them examples. Some people don't accept it; they only feel deaf, and you can't force them. I have patience and explain," summarizes Crina the way she talks about deafblindness.

Among all the activities she has participated in, she particularly enjoys face-to-face meetings, where people communicate and smile more. 

"They inspire each other with light, trust their friends, and influence each other. In light, there must also be understanding and gentleness", says Crina, recalling the gentleness she learned from her mother, who still guides her.

“We go all the way”

For the future, she desires more activities and better communication. 

As a person with deafblindness, Crina feels she can do whatever she wants. She enjoys traveling, discovering new cultures, and trying food from different cuisines. She can travel by train or airplane, and does her research before embarking on a new adventure: she searches for the itinerary on her phone, gathers information about the hotel where she will stay, reads comments and reviews from other travelers. This summer, she will go on a trip to Greece with her father and younger sister, together with a large group of deaf people. 

In the future, she dreams of more distant destinations, such as Africa or Asia, but until then, she believes there are still things to be done within the group of young people with deafblindness.

"I want to continue working, to develop projects as part of the team. I don't want to think that it's enough as it is, NO! We go all the way... even though I don't know where this end is!"

The National Conference The Education of Children with Deafblindness: Together Again!, “a marathon of life lessons”

Between March 22nd and March 24th, 2022, Sense International Romania, in partnership with The University of Bucharest, The Faculty of Psychology and Educational Sciences, Department of Special Psychopedagogy, The Babeș-Bolyai University in Cluj-Napoca, The Faculty of Psychology and Educational Sciences, Department of Special Psychopedagogy, and The “Alexandru Ioan Cuza” University of Iași, The Faculty of Psychology and Science, Department of Educational Sciences, organized The National Conference Education of Children with Deafblindness: Together Again!

The event brought together over 100 participants, special education and mass education teachers working with children with deafblindness/multisensory impairments, psychoeducational teachers, students, psychologists, social workers and other specialists. We spent together three intense days consisting in 12 hours of live presentations and stories full of emotion and hope.

20 guests addressed issues such as disability and resilience in times of war, digital educational resources for children with deafblindness, early intervention models, shared good practices and celebrated important achievements.

“For me, this conference was an opportunity to share my professional activity and celebrate my achievements in this field. Thank you, Sense International Romania, for giving us the chance to share our experiences and to enjoy many examples of good practice from other dedicated specialists involved in the education of children with deafblindness”, Gyöngyike Lakatos, special education teacher at Cristal School Center for Inclusive Education, Oradea

“It was a great opportunity to find out our colleagues’ opinions, interests, initiatives and achievements in their daily work”, Mihaela Adriana Moldovan, dr., psychopedagogy teacher, Cristal School Center for Inclusive Education, Oradea

The second online conference organized by Sense International Romania since the beginning of the pandemic used the advantages of the online environment to bring together participants from all over the country and even from the Republic of Moldova, a vibrant community of specialists who connected to the event „with their soul”.

“We have to be grateful to the pandemic because it forced us to find ways to be together from a distance. Such a conference with specialized content definitely has more advantages than disadvantages online: greater impact through access to a larger audience, distinguished guests, very interesting and useful presentations and materials, and, not to mention, lower costs. Thank you, Sense International Romania, because even now, 20 years after the first course I attended, I am still learning with you!”- Filimon Mihaiela, special education teacher, „Saint Vasile” School Center for Inclusive Education, Craiova

“I was really content to attend an event where I felt that people connected with their soul. The information was simply absorbed by the participants! Clearly, this conference must become a tradition!”- Viorel Micu, special education teacher, High School for the Blind, Cluj-Napoca

Both the speakers and the attendees enjoyed seeing their colleagues again, sharing ideas, and meeting new people even though they were not physically together.

“A long-awaited and highly desired conference! I am so happy for the opportunity to see my collegues spread around the country after this pause. I am extremely glad to see that the two years of the pandemic have taught us a lot: we have adapted and readjusted to all challenges and we have learned new things. I look forward to the next edition! “- Eva Oprea, special education teacher, Cristal School Center for Inclusive Education, Oradea

“Although physically separated, we felt the emotion of seeing our dear colleagues again, who walked along us on the path of early Intervention. During the conference, I learned how wonderful it is to share your own experience and to listen to the experiences of those around you”- Daniela Anton, educator, “Vasile Pavelcu” Special Technical High School, Iași

“For me, the conference was very valuable. I had the opportunity to share ideas, emotions, good practices and to connect and reconnect with teachers and colleagues across the country”- Teodora Neagu, psychopedagogy teacher, The School Center for Inclusive Education No. 2 Sibiu

All presentations had sign language interpretation, provided by a dedicated and talented team: Ioana Tufar and Mihaela Dascăl.

“It was an honor for me to make accessible through LSR interpretation presentations which were very professional, but also life lessons. Three days full of information, well-explained concepts, an useful marathon! May such experiences continue! ”- Assist. Univ. Dr. Ioana Tufar, sign language interpreter

If you want to read more about the conference, including the abstracts, please visit: https://surdocecitate.ro/conferinta-2022/