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:

Today, December 3rd, is the International Day of People with Disabilities. Words like DIGNITY, EQUAL OPPORTUNITIES, INCLUSION, ACCESSIBILITY, RESPECT or NON-DISCRIMINATION must turn into deeds!

Today, more than ever, we remember professor Vasile Adamescu, who said: ”I hope that through my example, I can help people in difficult situation, inspire people with disabilities and convince the society that we too can be useful.”

Today is the day when, more than ever, the principles of the United Nations Convention on the Rights of People with Disabilities must prime:

• Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
• Non-discrimination;
• Full and effective participation and inclusion in society;
• Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
• Equality of opportunity;
• Accessibility;
• Equality between men and women;
• Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

Only together can we do this! All the best wishes to all people with different abilities, to their families and dear ones!

Sense International Romania launches the campaign I TOO HAVE A VOICE! Children ad young people with deafblindeness from partner schools will prove they have a voice, making videos about one or more of the rights of people with disabilities as they are described in the UNCRPD.

This campaign is part of the project called Education with Sense International, funded by Nelumbo Foundation. Implemented in 2020-2023, the project aims to organise activities with children and young people with deafblindness from Romania, promoting their own rights themselves, as well as to develop an online course in the field of deafblindness.

The campaign regulations will be available soon and sent by email to all Sense International Romania partner schools.

Bucharest. November 24^th. The Foundation Sense International Romania, Code for Romania and Orange Foundation are launching the platform www.esense.ro during the International Conference “Deafblindness during the Pandemic”, organised online.

The platform is founded on the professional expertise of the specialists in the field of deafblindness from the Sense International Romania and partner schools: School Centre for Inclusive Education Cristal Oradea, School Centre for Inclusive Education Constantin Pufan Timisoara and Special Technological Highschool Vasile Pavelcu Iași, combined with the expertise of professional and enthusiastic community of young people from Code for Romania, who develop IT solutions to respond to various issues related to people and society.

The project e-Sense is funded by Orange Foundation with the amount of 414 804 lei, through the programme “The World through Colour and Sound”, the largest fund dedicated to people with hearing / visual impairments in Romania.

“This project appeared as a response to the concrete needs of children with deafblindness. The work with the child in this context, the games created through these digital instruments, are benefit when educating special children, ensuring a high level of communication, socialisation, cognitive and psychological development, a support for the parents and/or the teacher”. Loredana Prisecaru, Special Technological Highschool Vasile Pavelcu Iași

“We are a handful of people trying to do all that we can to change the life of others for the better. At the same time, the feeling of being a part of this change, transforms us too into better people.” Eva Oprea, School Centre for Inclusive Education Cristal Oradea

Digital technology is increasingly prevalent in the education system and everyday life, but not for children with deafblindness. In order for them to have access to quality education and not to "fall behind", software is needed to adapt to their specific needs given by the combination of visual and hearing impairments.

In the absence of vision and/or hearing, access to knowledge is more limited, which is why specific sensory stimulation activities are necessary, supporting the child to be in contact with the world. The main aim of e-Sense is to transpose into the digital technology realm exercises that lead to the development of perceptive skills to detects sensory stimuli and to become aware of their presence, the development of attention to sensory stimuli, to localise them. Explore and manipulate, recognise and discriminate.

“e-Sense is the solution that schools had needed for a very long time. A customisable solution that allows teachers to utilise, in an adapted manner, the specific situation of each child, because each child has very specific requirements.  We succeeded to build a system that will support teachers in early intervention and not only, with flexible exercises and games that follow the curriculum in force and that is open to everyone, it is open-source, replicable and reusable all around the world.” Olivia Vereha, Chief Operations Officer and co-founder Code for Romania

After registering an account on the platform www.esense.ro, the specialist will have access to a series of exercises that can be made together with the child. The specialist will have an increased level of control upon the exercises features such as shapes, colours, contrast, size, objects direction of movement – all in order to personalise the exercises depending on the child’s development level. The specialist will be able to record, monitor and assess the child’s progress, and therefore having a better initial and on-going assessment process.

The exercises are created in accordance with the National Curriculum for the Education of Children with Deafblindness/Multisensory Impairments (Ministry of Education, Research and Innovation Order no. 5243/01.09.2008) and the Educational Content for Ante-pre-school Early Intervention for with Deafblindness/Multisensory Impairments (Ministry of Education Order no. 3071/18.01.2013).

About Sense International Romania

Sense International Romania is a Romanian organisation established in 2001 with the aim to improve the life of people with deafblindness and multisensory impairments in our country. SIR is the only organisation in Romania actively fighting for the rights of people with deafblindness. Through national level programmes that promote the early intervention foe babies born with sensory impairments, the education of children with deafblindness/MSI and the provision of vocational services, SIR manages to brig a change for the better in the life of hundreds of people with this type of disability. Our field of interest is represented  by 4 major strategic directions: promoting the rights of people with deafblindness, health, education and social inclusion.

www.surdocecitate.ro/en/

About Code for Romania

Code for Romania is the second largest organisation in the field of civic technology in the world. The association develops pro-bono software solution, in open-source system, to solve social issues, with the support of more than 1800 volunteers from Romania and Abroad. In 2020 alone, the solutions in the Covid-19 ecosystem (stirioficiale.ro, rohelp.ro, datelazi.ro etc) and the voting ecosystem (Vot Diaspora, Rezultate Vot etc.) have been used by over 8 million Romanians.

www.code4.ro/en/

About Orange Foundation

Orange Foundation is a non-for-profit organisation involved in the life of the community, through the implementation of philanthropic projects meant to bring positive changes in the life of disadvantaged people. In more than 8 years of activity, Orange Foundation invested over 6.5 million Euro in digital education projects for disadvantaged people and in health, education and cultural projects for the benefit of people with visual or hearing impairments, aiming at their social integration. For more details, visit www.fundatiaorange.ro.