June is about deafblindness
June is about deafblindness
Every year, in June, we have celebrated Helen Keller alongside children and young people with deafblindness and multisensory impairments from our partner schools, their parents, siblings and teachers. We asked a few questions on this from our colleague, Ramona Antonie, Programmes Manager with Sense International Romania, responsible with this wonderful activity in the organization. Here are her answers.
1. What does June of each year mean for Sense International Romania?
One word: Awareness!
Many years ago, more than 10 years ago, Sense International Romania began to celebrate Helen Keller, a person recognized internationally as the first person with deafblindness, which means someone who has both visual and hearing impairments.
In order to raise awareness of this category of people, it was necessary to find a person who is representative among the population, who was born with or acquired deafblindness throughout her life and had exceptional achievements, and then to promote her among our partners, our acquaintances, on media channels and online to the local and national community.
Why Helen Keller? Because if you look at Helen Keller and study her life, you realize that every child with deafblindness is able to achieve something meaningful in life.
Going on the same pattern, we chose this month, June, because Helen Keller was born on June 27th 1880.
A few words about Helen Keller: Helen was a strong person and extremely determined to study, and with the support from dedicated people, as was her teacher Anne Sullivan, managed to change her destiny and become a symbol recognized throughout the world.
She studied and received the Magna cum laude as the first person with both impairments to obtain a Bachelor of Arts degree, and then obtained a Ph.D. from Harvard. She traveled extensively and campaigned for the rights of people with disabilities and for access to equal opportunities for disadvantaged groups.
It’s important to point out that this disability is recognized in Romania by Law 448/2006 as deafblindness, alongside physical, visual, hearing, associated, rare diseases, so on, that people who have this double hearing and sight impairment can get the deafblindness certificate, although most people with deafblindness in our country have either hearing impairment or sight impairment on their disability certificate, even if they have both senses affected.
The June message we're sending?
Any child with deafblindness can do more than you might think if given the chance and support to reach their potential.
It's a message of hope focused both on parents of children with deafblindness, on young people and adults with this disability, but especially on educational, social and economic decision-makers.
2. You have been involved in the activities organized for the Helen Keller International Week from the beginning. How did these activities evolve over time?
With painter Ovidiu Kloska, Focșani, 2019 © Gabriel Ciribașa
I could say that we started with small steps, from smaller to larger in an increasingly structured, transparent and open way for any school that wanted to carry out such activities. The minimal criterion is that there are children with deafblindness/multisensory impairments in these schools, who are involved in specific activities. Also, we have encouraged collaborative projects between special schools and mainstream schools so as to increase the level of cooperation and acceptance between students, regardless of whether students with disability study or not in those mainstream schools.
Over time, we were surprised by dedicated teachers from our partner schools with a multitude of activities starting from trips and orientation and mobility activities in the mountains, at the seaside, in various cities and museums, modeling, painting and finger painting, horse therapy, saline therapy, pool hours, cooking workshops, preparing various pastries, gardening, painting with light and puppet theatre, pamphlet creation and distribution to other colleagues, surprise parties, huge puzzles, sensory tracks and the list continues.
If we were to estimate a number of children in the 10 years or so of Helen Keller's activities on the basis of the activity reports we have, these activities were attended by over 5000 students, 500 of them with deafblindness.
3. What's different this year?
Transparent masks, 2020 © Gabriel Ciribașa
This year was definitely different in a way that we could not have predicted when we did our project planning, respectively the experience of an international pandemic generated by the Sars-Cov-2 virus, which put in front of us the challenge of continuing our activities in a completely different way. Thus, after team consultations within Sense International Romania, as well as with our partners in the education system, we have shifted the funds raised for the Helen Keller project in the acquisition of transparent masks useful to hearing-impaired students that we have directed where we have been asked to, various educational materials for children and parents, but also through the acquisition of hygienic-sanitary materials so that those school activities that take place during this period – national evaluations for students in the final years, be carried out in maximum safety for both pupils and teachers.
Below is the message of Professor Manuela Ionescu, from CSEI 2 Sibiu:
Thank you for the masks! These are very useful to students with hearing impairment because they can read lips and at the same time much of the face remains free so that it is easier to understand the facial expressions, making it easier to dialogue with children.
We hope that next year we will return to the activities we were doing with love with students with deafblindness and multisensory impairments.
I felt the lack of joy of a happy child's smile, a colorful balloon lifted to the sky with Helen Keller's name, photos of students happy with the novelty of some discoveries from a pleasant activity and the happiness of knowing that YOU can do something by your own forces, as well as some hashtags specific to this month that constantly appeared on the organization's Facebook page :
#helenkeller #dincolodesimturi #surdocecitate #numeleșcolii #SenseInternationalRomania
4. What is your most beautiful memory of Helen Keller International Week?
Bucharest, 2013 © Sense International Romania Archive
I don't know if it is fair to say that I only have one memory which I consider the most beautiful. I certainly have several memories of celebrating Helen Keller, from the young children in kindergarten who explored with their hands and feet various materials and textures and were extremely happy about it, to planting flowers and shrubs in the school garden or attending a hypotherapy session with them as was the case with 3 of our partners from Bucharest and Iaşi, to raising colored balloons with a group of enthusiastic children from Sibiu, or to accompany young people in their final years on a visit to a printing press or in the framework of a painting workshop with partners from Focşani, or to taste a wonderful cake with our partners from Oradea, and the examples can continue.
I could not choose just one beautiful moment because there is a whole collection of happy moments that resulted in happy smiles and the message that children and young people with deafblindness constantly convey: "I too can!"
Making play inclusive: den making
Making play inclusive: using household items
Making play inclusive: hand-under-hand communication
Making play inclusive: signing songs
Making play inclusive: messy play
Making play inclusive: sensory stories
COVID-19 and Deafblindness
Recommendations on inclusive policies from the global deafblind community.
In these times of turmoil, with the whole world severely affected by the Coronavirus (COVID-19) outbreak, combined with other critical incidents like the recent earthquake in Zagreb, Croatia, we must ensure that those who are the most left behind, neglected, vulnerable and exposed to double isolation in any crisis, persons with deafblindness, are also equally protected according to Article 11 of the UN Convention of the Rights of Persons with Disabilities (CRPD).
Representing between 0.2% to 2% of the global population, an estimated 15 to 155 million persons on earth experience combined hearing and vision impairments – deafblindness. Adding dual sensory impairment due to aging, the number rises to 6% implying as many as 467 million experience a degree of deafblindness during life[1]. This group of persons with deafblindness must not be neglected and forgotten during this time of crisis.
Furthermore, we would like to emphasize that the number of those persons rises with age, making the elderly in our society more vulnerable to the virus. Older persons with deafblindness experience a higher risk than most others as, in addition to being in the high-risk group due to age, they struggle to cope with both accessing and processing information, as well as resolving daily tasks such as shopping for essentials like basic food and/or medicine, a couple of examples among many issues being faced. The crucial fact is that the combination of their dual sensory impairment and age strongly impacts on and increases the complexity of their situation, increasing their need for proper services to reduce risk of serious and severe health complications due to COVID-19.
The General Comment No. 2 on Article 9: Accessibility of the CRPD commits state parties to enable persons with deafblindness to access information, communication and other services in order to live independently and to effectively participate in socitey.
That is why the European Deafblind Union (EDbU), according to the received inputs from its national members, compiled the following recommendations which are essential in providing the same standard of services and support to the deafblind persons in the everyday life and severe crises such as this pandemic.
The European Deafblind Union (EDbU), the African Federation of the Deafblind (AFDB), the Latin American Federation of the Deafblind (FLASC) and the World Federation of the Deafblind (WFDB) urges the UN, WHO, EU bodies, state parties and governments across the world to ensure that:
The importance of media access – All media communication should be in plain language and accessible for persons with deafblindness through (but not limited to) closed captioning, national sign language, clear-speech translation, high contrast and large print publications. It must also be made available at the same time while information is given.
Dissemination of official information – Official COVID-19 instructions, guidance and guidelines should be provided in accessible formats for Deafblind persons that includes large print and braille.
Access to Service Providers – All services provided to the public due to the COVID-19 outbreak like Red Cross services, telephone helplines and other providers of support and/or psychological help are accessible to all persons with deafblindness.
Access to Digital Media – Digital media should include accessible formats in plain language for deafblind persons. Special online access should also be given in plain text format (without any pictures and advertising) which may need adjusting if required. It is also essential for text and/or email messages to be sent with such information upon request.
Access to Personal Protection Equipment (PPE) – Urgent priority should be considered to ensure that all persons with deafblindness can be given priority access to protective gear such as masks and gloves due to the extreme difficulty of doing so because of mobility limits during lockdowns or impossibility to finding help.
Protecting the Deafblind interpreters (interpreter-guides) – The nature of our unique disability of Deafblindness encourages close proximity and touching of hands with Deafblind interpreters (interpreter-guides) which allows to follow information on the environment surrounding them and translations from spoken/written language. Therefore, Deafblind interpreters (interpreter-guides) who work in emergency and health settings should be given the same health and safety protections as other health care workers dealing with COVID19.
Awareness raising – Immediate awareness raising on support to Deafblind persons is essential and should be established together with national organisations who should also have a key role in protection campaigns.
Access to services while in quarantine or in need of medical help – During quarantine or when in need of health services, deafblind persons must have access to Deafblind interpreting services (including interpreter-guides), support services, personal assistance as well as physical accessibility. As such, persons with deafblindbess cannot be deprioritized on the basis of their disability.
Access to work and education – Remote work or education services must be equally accessible to all employees/students with deafblindness.
Restrictions during COVID-19 crisis – Measures of public restrictions such as gatherings limit of 2 persons in some places must consider persons with deafblindness on an equal basis with others. This is due to the fact that most, if not all, deafblind persons still need a Deafblind interpreter to help them to get all necessary instructions and information when they do not have family support or where alternative communication methods have failed, therefore, it is vital that our unique disability is treated with respect under such restrictions.
For DPOs representing persons with deafblindness we advise a reduction of all direct services and organise work from home if possible while still ensuring and continuing:
- Organisation of the Deafblind interpreting (interpreter-guide) services for persons with deafblindness, so that they can urgently reach out and help elderly and lonely persons with deafblindness
- The vital task to make sure that the most isolated deafblind persons receive the most urgent information, all conveyed in their preferred mode of communication, while also ensuring that they have prioritized access to food and medicines
- Recognition of deafblind persons – advise them to use red-white canes so they are more visible and/or hold at least an official card that indicates their deafblindness to the authorities and emergency services.
The European Deafblind Union (EDbU), the African Federation of the Deafblind (AFDB), the Latin American Federation of the Deafblind (FLASC) and the World Federation of the Deafblind (WFDB) are available to assist authorities and other organisations with guidance and information regarding the equal and accessible services as well as information for persons with deafblindness.
[1] https://www.wfdb.eu/deafblindness-and-inequality/
Photo source: https://www.brailleinstitute.org/event/aim-to-be-safe
COVID-19: Who is protecting the people with disabilities? – UN rights expert
GENEVA (17 March 2020) – Little has been done to provide people with disabilities with the guidance and support needed to protect them during the ongoing COVID-19 pandemic, even though many of them are part of the high-risk group, today warned the UN Special Rapporteur on the rights of persons with disabilities, Catalina Devandas.
“People with disabilities feel they have been left behind,” the UN human rights expert said. “Containment measures, such as social distancing and self-isolation, may be impossible for those who rely on the support of others to eat, dress and bathe.”
“This support is basic for their survival, and States must take additional social protection measures to guarantee the continuity of support in a safe manner throughout the crisis.”
The UN expert stressed that reasonable accommodation measures are essential to enable people with disabilities to reduce contacts and the risk of contamination. They should be allowed to work from home or receive paid leave to guarantee their income security. Family members and caregivers may also require reasonable accommodation to provide support to people with disabilities during this period.
“Access to additional financial aid is also vital to reduce the risk of people with disabilities and their families falling into greater vulnerability or poverty,” she explained.
“Many people with disabilities depend on services that have been suspended and may not have enough money to stockpile food and medicine, or afford the extra cost of home deliveries.”
Devandas also noted that the situation of people with disabilities in institutions, psychiatric facilities and prisons is particularly grave, given the high risk of contamination and the lack of external oversight, aggravated by the use of emergency powers for health reasons.
“Restrictions should be narrowly tailored, and use the least intrusive means to protect public health” she said. “Limiting their contact with loved ones leaves people with disabilities totally unprotected from any form of abuse or neglect in institutions.
“States have a heightened responsibility towards this population due to the structural discrimination they experience.”
The UN expert stressed that persons with disabilities deserve to be reassured that their survival is a priority and urged States to establish clear protocols for public health emergencies to ensure that, when medical resources are scarce, access to healthcare, including life-saving measures, does not discriminate against people with disabilities.
“To face the pandemic, it is crucial that information about how to prevent and contain the coronavirus is accessible to everyone”, she explained.
“Public advice campaigns and information from national health authorities must be made available to the public in sign language and accessible means, modes and formats, including accessible digital technology, captioning, relay services, text messages, easy-to-read and plain language.”
“Organizations of people with disabilities should be consulted and involved in all stages of the COVID-19 response,” Devandas concluded.
Source: https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25725&LangID=E
Orientation and mobility on skis
For three day, a group of young people with deafblindness and multisensory impairments accompanied by their teachers and Sense International Romania staff, attended the annual Orientation and Mobility trip which took place in Predeal, a mountain resort in the center of the country.
Participants spent wonderful moments together, getting to know each other better through games and group exercises, learning from each other, trusting themselves and those around. They worked individually and in teams, created arts and crafts and carnival masks, enjoyed a raffle and the time spent together.
The novelty for this year’s activity was the fact that the young people, for the first time in their life, experienced skiing. With the support of four enthusiastic volunteer ski instructors, they had their very first experience on a ski slope: they learned how to slide, break and come down a small hill.
My skiing experience was both pleasant and fun. I am happy that I was able to learn something new, something I never thought I would ever try, says I.D., a 19 years old young man included in the Sense International Romania Vocational Pogramme.
Working with these special young people from Arad, Bucharest, Focșani and Timișoara has been a unique experience for me. I was pleasantly surprised by how fast they caught up on some skiing techniques, by their courage and their ability to learn. I am happy we had the opportunity to work together, says one of the skiing instructors.
The trip is part of Sense International Romania efforts to work with groups of young people with deafblindness and multisensory impairments on independent living skills, team work and youth leadership, providing them with the necessary tools to become a voice in promoting the rights of people with deafblindness.