It was back in February 2020 that we had our last face-to-face meeting with the children and young people with deafblindness. It was a winter encounter, with tons of snow and lots of smiles and happiness as they all had their very first experience skiing. And then the pandemic came and we had to put a stop to all such experiences, moving as much as possible into the online.

Of the things we moved online was the advocacy and leadership work with a small group of young adults with deafblindness. Since January, every last Thursday of the month was about them, discussing important themes such as the right to education, to health, to work and employment, keeping safe while online and the right to fun, leisure and sports.

The beginnings were not easy at all, trying to communicate while online proved more of a challenge than we expected. Poor internet connection, insufficient face and body language, all of these made it difficult to communicate. Having a sign language interpreter improved things a lot, the group started becoming more vocal, sharing ideas and personal experiences, getting to know and trust each other.

July came and, after carefully considering all the risks, we took the decision to finally have a face-to-face meeting with the group. We all gathered together in Predeal, seven brave young people – 3 young women and 4 young men – accompanied by 5 parents and 1 sibling.

We had serious discussions about what deafblindness is. To some of the young people, it was a revelation to understand that them, having both hearing and visual impairments, meant they were young people with deafblindness. We talked about people with disabilities in general, and people with deafblindness in particular, who made it in life and succeeded in overcoming all challenges. We talked about the importance of education and how this leads to an independent life, we talked about their rights as per the United Nations Convention on the Rights of People with Disabilities. We talked about what it means to write a resume, to look for a job, go to an interview, sign a work contract – what are the rights and responsibilities involved. Because the entire group consisted of young people over the age of 18, therefore young adults, we discussed the concept and importance of volunteering and, by the end of the workshop, they all agreed to become volunteers of Sense International Romania, advocates for the rights of people with deafblindness.

We had fun as well together, taking a trip by train to visit Peleș Castle in Sinaia. While the hike to the castle was quite hard for some of the participants, everyone – young people and parents alike – enjoyed getting there and admiring all the beauties of the castle. Upon return, we created and hand-painted frames for a photo session at the end of the meeting.

You can find below a life story. Dorel Santi is a person with deafblindness from Sibiu, a true advocate for the rights of people with disabilities. We thank him for giving us the permission to publish his story on our website.

In June, the entire world celebrates the Helen Keller month – the month of deafblindness. Helen Keller is a symbol, she lost both her sight and hearing at the age of 19 months. She was a writer, the first person with deafblindness to graduate college. At national level, we have Vasile Adamescu. Officially, he was a blind person because the law does not allow for people with deafblindness to have a personal assistant.

Deafblindness = a person with both hearing and visual impairments, a different degrees, or the lack of both senses. Deafblindness generates major difficulties in communication, orientation and mobility. Deafblindness has 2 categories: congenital/from birth and acquired.

I thought hard whether to write a few words about myself or not. Some people know me personally, others via social networks.

I am a person with deafblindness from birth, I cannot see with my right eye and I can hear almost nothing with my left ear, I am wearing hearing aids on both ears and I have a ”French” accent due to the hearing impairment.

I went to mainstream school and, at one point in the first class, I was transferred to the Special Inclusive School no. 1 on Sibiu – not no. 2, for children with hearing impairments, probably because they thought I had other issues as well. After a few weeks, the inclusive school director called my parents in and told them: ”take him back to mainstream school, he is more intelligent than the typical children”.

I attended all school competitions in mathematics and geography, starting from the fifth grade until the end of high school. Mathematics helped me a lot when entering high school and at university. On the other hand, I was really bad at grammar, almost failed to pass the year, as people with deafblindness and hearing impairments perceive sounds differently, including grammar.  In secondary school, I had a Romanian language teacher who made us read one book and learn by heart one poem per week. I used to hate him for having to do this instead of playing football and hanging out in the neighbourhood. Maybe it was all for the best, as I got my taste for reading.

In high school, I was followed and investigated by the Securitate (military police) for anti-communist propaganda, as per my file at the National Council for the Study of Security Archives, I had been given up by my best colleagues and friends. After graduating high school, I went into the army at Diribau, doing agricultural work and constructions. Due to my disability, I should not have been called into the army, but this is what he Romanian Communist Party wanted for me.

After the army, I entered the Economic Studies Academy inBucharest, distance education. I hated he capital city, I used to go once every two weeks there to copy/write the courses from my colleague students, as back then there were no copying machines. I abandoned university 2 years later and I started the Faculty of Economic Sciences in Sibiu. I wanted to abandon this one as well, during my first year I thought higher education was not for me: i wasn’t able to hear what the professors were teaching, but eventually I graduated with a scholarship in both thirds and fourth year.

I was married to an economy teacher. I worked in the private sector, but I also worked as a public clerk. Currently, I am retired due to health issues caused by a double coxarthrosis surgery on both hips, I have difficulties walking, I walk like a duck or a goose. In school, I was an athletics champion.

I worked as a public clerk at Sibiu Townhall, with two mayors, Condurat and Iohannis, enrolled in the HR Department until 2000, and after that I was appointed chief of a newly established office dealing with personal assistants and people with disabilities. My first year of work was titanic, we took over all work books from IPHS, they needed to be checked, length of work had to be calculated. After I left, the office ”vanished” into the Social Work department.

I sued to attend many events, seminars, lectures and even electoral debates in the field of disability. Once, I was invited by a university professor to talk to students about my life as a person with disabilities. I didn’t ‚now what to say to them, I told them a few things about myself, I said I have the same needs as the other person, I earn my living through work, I have hobbies, I like parties and women, that in high school or in university we had parties and drinking evening every week. At one point, I simply let them ask the questions. At the end, I was surprised when the students invited me to have a beer with them.

Five years ago, I was refused and humiliated at a job interview, when I mentioned I have a disability, the interviewer suddenly stood up and left. I came home angry, feeling like I needed to do something for people with disabilities. I contacted Matei Ghigiu to create a group where we can debate inclusion, independent living, accessibility and the rights of people with disabilities. He told me this is in vain, there are only a handful of specialists in the field and that is why he didn’t want in. I abandoned the idea, so the group and the page are only to promote disability.

We wish all children around the world a sincere and warm HAPPY CHILDREN'S DAY today, June 1. Also today, we warmly announce the start of the Helen Keller International Day, an event so dear to us, a month dedicated to raising awareness of deafblindness under the slogan Together again!

We thank the 14 partner schools that, so far, have gladly sent us their plans to celebrate a prominent figure in the field of deafblindness, Helen Keller.

Together again!

During the whole month of June, approximately 500 children with deafblindness and sensory deficiencies from Arad, Bucharest, Buzau, Cluj Napoca, Focșani, Galați, Iași, Oradea, Sibiu, Târgu Frumos and Timișoara, together with over 150 teachers and parents, will perform various activities to mark this special moment in the world of deafblindness: creative workshops in sculpture, painting and drawing, sensory games, theater, pantomime and dance, culinary art, gardening, community awareness activities, nature trips, museum visits, therapy with horses etc.

Our desire is to give children and young people with deafblindness the chance to be noticed not only because of their uniqueness, but especially because with support, any child, young person and adult with deafblindness can show what they can do and how can get involved.

Our partners

Arad, Sfânta Maria Special High School; Arad, School Center for Inclusive Education; Bucharest, Special Gymnasium School for the Visually Impaired; Bucharest, Sfânta Maria Special Vocational School for the Deaf; Bucharest, Special Technological High School no. 3; Buzau, Special Technological High School for Children with Hearing Impairments; Buzau, Special High School for Visually Impaired Children; Cluj Napoca, Special High School for the Visually Impaired; Focșani, Elena Doamna School Center for Inclusive Education; Galați, Paul Popescu Neveanu Special Vocational School, structure of the Emil Gârleanu Special Vocational School; Iasi, Vasile Pavelcu Special Technological High School; Oradea, Cristal Inclusive Education School Center; Sibiu, School Center for Inclusive Education No. 2; Târgu Frumos, Moldova Special High School; Timișoara, Constantin Pufan School Center for Inclusive Education.

Photo source: Hannah Busing on Unsplash

Norman Brown, parent of a child with deafblindness, a professor at the Birmingham University and coordinator of the
programme to support parents of children with deafblindness, wrote the ”Parent's 10 Commandments for the Specialist”:

1. 1. Assure me that I speak with someone who knows what it is all about!
   2. Do not forget that I know what I talk about!
   3. Do your best to find someone who has gone through what I am going through!
   4. Be honest with me!
   5. Truly help me, don't just give me advice!
   6. Involve me in everything you do with my child!
   7. Don't teach my child without teaching me!
   8. Accept my weakness!
   9. Accept your weakness!
   10. Don't tell me you understand, show me that you understand!

Photo by Dragos Gontariu on Unsplash

We propose that today, March 8, we get to know the life stories of eight women with deafblindness who, through their strength and determination, broke the barriers created by their lack of sight and hearing and managed to prove that nothing is impossible.

Victorine Morriseau (1789-1832, France) was the first known person with deafblindness who learned a formal language of communication (in a religious context).

Laura Bridgman (1829 –1889, U.S.A.)  was the first educated  child with deafblindness in the United States, more than 50 years before Helen Keller. At the age of two, due to scarlet fever, she loses her sight, hearing, smell and taste. She arrives at the Perkins Institute for the Blind where she learns to communicate using tactile finger-spelling and Braille.

Ragnhild Kåta (1873 – 1947, Norway) was the first person with deafblindness in Norway to receive a formal education. At the age of three, she lost four of her five senses: sight, hearing, taste and smell, most likely from scarlet fever. At the age of 15, she started studying at the Hamar Institute for the Deaf where she learnt to read and write in Braille, but also to speak. She learnt to embroider, knit and weave, thus becoming independent.

Helen Keller (1880 – 1968, U.S.A.) she is probably the best known person with deafblindness in the world. An extremely strong woman, she became a writer and activist for the rights of people with disabilities, despite the fact that, at the age of only 1 year and a half, she completely lost both her sight and hearing, due to an illness - most likely meningitis. With the help of her teacher, Anne Sullivan, also a visually impaired person, she learnt to communicate, then attended the courses of the Perkins Institute for the Blind and then Harvard University, becoming the first person with deafblindness with a degree in arts.

Yvonne Pitrois (1880 –1937, France) was a writer. At the age of 7, she lost her hearing due to fever caused by sunstroke, and her vision was deeply affected. She wrote numerous articles in France, England, Switzerland and the United States and at the age of only 18 she published her first book. She became a member of the French Academy in 1929.

Alice Chapman (1901 –1966, Australia), the first person with deafblindness to receive an education in Australia. She lost both her sight and hearing at just two years old due to meningitis. She learned to communicate at the Institute for the Hearing Impaired, a school she graduated from and where she remained as a teacher.

Olga Skorokhodova (1911 – 1982, U.S.S.R.) was a scientist, therapist, teacher and writer. She was born in a small town in the U.S.S.R. (now Ukraine) and at the age of five she lost both her sight and hearing due to meningitis. At the age of 13, she arrived at the Clinical School for Deafblind Children, where, under the guidance of Professor Ivan Sokolyansky, she learned to speak and communicate. She became a researcher at the Institute for People with Disabilities within the Soviet Academy of Pedagogical Sciences.

Theresa Poh Lin Chan (1943 –2016, Singapore), writer and teacher, she lost her hearing at the age of 12 and her sight two years later. She was accepted to the Perkins Institute for the Blind, where she studied mathematics, learned to dance, ride, skate, and knit. It was there that she fulfilled her greatest dream, that of meeting Helen Keller. She later became a teacher at the School for the Blind in Singapore.

Information and photo source: Wikipedia

• We started the e-Sense project, through a meeting with the team project consisting of representatives of partners: Sense International Romania, Code for Romania, School Centre for Inclusive Education ”Cristal” Oradea, Special Technological Highschool "VasilePavelcu" Iasi and School Centre for Inclusive Education „Constantin Pufan” Timişoara. The project is funded by the Orange Foundation through the World through Color and Sound 2019 Program.

• We organized a trip to the mountains where children and young people with deafblindness participated in communication and socialization activities, orientation and mobility - among others, for the first time for them, they learned to ski.

• We organized the Beyond the Senses event - where the organization's partners and funders experienced deafblindness in the Sensory Tent, on the occasion of its 19th anniversary.

• We started the Education with Sense International project, funded by the Nelumbo Foundation through Sense International UK, which aims to conduct an online course in the field of deafblindness and the formation of a group of young people with deafblindness in advocacy and leadership.

• We organized our first online workshop in the field of deafblindness, part of the e-Sense project.

• We have equipped special schools where children with deafblindness study with transparent masks, disinfectants and other protective equipment against the SARS-COV-2 virus, replacing the usual activities organized in schools on the occasion of International Helen Keller Week.

• We equipped the partner schools in the e-Sense project with tablets for children with deafblindness and laptops for teachers.

• We have created accessible videos, in sign language, with contrast, subtitles and text, addressed to people with visual and hearing impairments, addressing major issues of the current context of life - what this virus means, how to protect ourselves, what to do if we have symptoms, from where do we get information?

• We developed the Sensi project - online safety for children and young people with sensory disabilities, a project funded by the Orange Foundation through the World through Color and Sound 2020 Program.

• For families, we made and translated materials containing ideas for activities, games and exercises that can be done with children with deafblindness at home, with minimal costs, to continue the therapy that took place in schools, through the series of materials #thursdayplay.

• For teachers, parents, psychologists, educators, social workers, doctors, physiotherapists, students - we organized for free the Online International Conference Deafblindness in the context of the pandemic.

• We launched the Campaign I TOO HAVE A VOICE! on the occasion of December 3 - International Day of People with Disabilities - through which children and young people with deafblindness will have a better understanding of their rights, as described in the UN Convention on the Rights of People with Disabilities.

• At the end of the year, we thank all those who have been and are with us. We especially thank the companies that, despite a difficult year, have chosen to direct 20% of the profit tax to the cause of children and young people with deafblindness in Romania.

In 2018, we celebrated for the first time December 3, the International Day of Persons with Disabilities, through activities designed to highlight the qualities and resources that students with deafblindness and multisensory impairmens have. In 2019, we decided that this day would be celebrated in memory of VASILE ADAMESCU, a person with deafblindness, a member of the Board of Directors of Sense International Romania, a Promoter, in the true sense of the word, of this very special disability.

This year, 2020, is one that challenged us to deal with the pandemic caused by the SARS-COV2 virus. This context has put us in a position to identify new opportunities to be in contact with people with deafblindness, with our partners who have been with us for years.

We do this in a different way, which involves using digital technology in such a way as to make us friends, an easy tool for communication, connection and openness to access resources, opportunities and, above all, to be connected with others beyond all the impediments related to maintaining the physical distance and the other measures related to the personal safety of each one, but also of the loved ones in our community.

The campaign will start from 3 December 2020, the International Day of People with Disabilities, and will run until 31 March 2021. This campaign will raise awareness of some of the rights of people with disabilities, in accordance with the United Nations Convention on the Rights of Persons with Disabilities, presented in a way that is accessible to children and young people:

• Equal rights;
• Girls and women with disabilities;
• Children with disabilities;
• Freedom, safety, protection;
• Independent life, mobility;
• Education;
• Health;
• Family;
• Fun, good times and sports.

For a better understanding of these concepts, we have created the material "I too have a voice - the Convention on the Rights of Persons with Disabilities", which can be downloaded below in graphic and text format: