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Deafblind International World Conference 2011

A conference podium with banner 'Deafblind International World Conference 2011'
The opening ceremony led by Isabel Amarel of the Instituto Polit cnico de Set bal, Portugal (Chair of the Scientific Committee).

In September 2011, CBM attended the 15th Deafblind International (DbI) World Conference, entitled 'Inclusion for a lifetime of opportunities’. The conference sought international input to define solutions and recommendations in the development of lifelong services for persons who are deafblind.

During this conference, Brazilian and Latin American stories and experiences were shared to promote regional policy and development. CBM - a member of the DbI Council - was represented by advisers and invited delegates, and was referred to in a number of presentations as an important contributor to developments in deafblindness.

CBM represented by staff, advisers, friends and partners

Group of people at a dinner ©CBM
The CBM AWG on the education of persons with deafblindness group sharing dinner after the AWG meeting. From left: Joseph Morrissey (CBM Co-worker, East Africa Region); Aline Zwanenburg (CBM Adviser); Sian Tesni (CBM Senior Adviser in Special Education and Co-ordinator of the group); Christine (Coco) Roschaert (Nepal Association for Deafblind People, invited guest to AWG, supported by CBM), opposite side – Bruno (Brazilian interpreter for Coco); Lucia Piccione (lCEVI Latin America and CBM adviser); Ann Thestrup (WFDB); Lex Grandia (President WFDB and CBM adviser)
From 27th September until 1st October 2011, people who are deafblind, their families / caregivers, professionals involved in the field, government departments, DPOs (Disabled People's Organisations) and other NGO / INGOs from all over the world attended the 15th World Conference in Sao Paulo, Brazil, 2011.

CBM was represented by staff members, advisers and partners / sponsored delegates. As a member of the DbI Council, CBM is involved in highlighting particular issues faced by persons who are deafblind in low and middle income countries in this complex area of work. At the same time CBM wishes its advisers and partners to be informed of latest trends and developments in the field.

At this conference there was strong representation from across Latin America. During the week the CBM Advisory Working Group (AWG) on the education of persons with deafblindness met to discuss their policy paper as well as other ideas and guidelines.

During the conference CBM was instrumental in suggesting that an informal meeting be held to call together INGOs and people from low and middle-income countries involved in working with persons who are deafblind. This meeting was attended by 23 people representing a number of organisations involved in service provision in deafblindness.

Participants’ / delegates' voices and signs during the conference:

Mr. Joseph Morrissey and Mr. Jospeh Shiroko

Two men seated together, one (smiling) with his arm around the other ©CBM
Joseph Morrissey (left) with Mr Joseph Shiroko (Programme Co-ordinator of the Brian Resource Centre in Kenya and member of the National Council for Persons with Disabilities in Kenya and a parent of a son who is deafblind, Brian)
Mr. Joseph Morrissey said, "Attending the XV DbI Conference gave me the opportunity to meet and listen to deafblind caregivers, interpreters, parents and programme / service deliverers from all over the world. Along with I/NGOs, all aim to give people with deafblindness their rights and ensure a meaningful position for them within society in an inclusive setting.

"In addition, it gave time to reflect, share and learn. I was amazed at the wonderful achievements made in Latin America. The key message for me was that with parental commitment and advocacy to governments a great deal can be achieved in ensuring that services are in place to help persons with deafblindness reach their full potential as citizens of their communities.

"In my dream I wish for an international immunisation programme against rubella to help with the prevention of one of the greatest causes of deafblindness in low and middle income countries.

"However there were some disappointments for me. One was that only 5 representatives were present from low and middle income countries. Also I did not get a strong sense of networking amongst service providers. To my mind DbI is currently too focused on Northern countries."

In this photograph Joe is talking with Mr. Jospeh Shiroko, one of the African representatives. Joseph Shiroko was one of the key respondents in the plenary session on parental involvement. He agreed with Joe in all he said. However he wanted to add, that for him it was Joe and CBM which were the first to give him hope when his own son, Brian was quite young. Until then he could see no hope for Brian and his future.

"Services in Kenya were very poor with little understanding about the needs of persons with deafblindness. With encouragement and support from people like Joe, Penny May Kamau, (formerly of Federation of Swedish Deafblind (Shia) and Perkins International), I have found a way to help Brian to the best of my ability.

"I believe that it’s vital to encourage parents, as they are one of the best advocates for their children, after all we have a vested interest in achieving the best for them. Each person who is deafblind has individual and complex needs, these needs to be respected and valued in developing plans for intervention.

"One of the biggest challenges at the moment in Africa generally is that there are very few services focussed on transition throughout provision for persons who are deafblind. Because of this, the little changes that can be made are lost as programmes are generally weak. I am still looking for the answer for my son who is now 24 years old, but with the support of experts in the field I know I am doing my best for him as well as others. Attending a DbI Conference like this gives me encouragement to continue."

Mrs Aline Hanning-Zwanenburg (CBM Advisor in deafblindness, based in Australia)

A woman sitting reading documents ©CBM
Aline hard at work in the AWG meeting
"It has been so good to be able to connect with others who work in the field of deafblindness. To be able to share ideas, to see what is being done in other countries and to hear about the latest research. I particularly enjoyed our AWG meeting as we worked on the policy paper and discussed ways forward in this area of work.

"I especially liked the presentations from people who are deafblind themselves. To listen to their personal experiences, to learn from their stories and to be inspired by their achievements, views and opinions.

"On the social side, it was good to catch up with old friends, to talk and laugh  and recollect past experiences with them. It's wonderful to see how beautiful friendships develop over the years within our field."

Mrs Maria Aparecida Cormedi, Brazil

Two women talking earnestly ©CBM
Nina (left) representing ADEFAV at the opening ceremony
Maria is known as ‘Nina’ to her friends, and as one of the member of the local planning group in Brazil, she gave one of the opening speeches at the Opening Ceremony.

Nina is one of the founders of ADEFAV, a resource centre for people with multiple disabilities, deafblindness and visual impairment. The resource centre was founded in 1983 and - thanks to CBM - the Resource Centre now functions as a support centre not only in Brazil, but for the Latin American Region. Working with the professional support of Perkins International, professionalism has expanded to the region.

Nina stated that she is very proud that this conference was being hosted in Brazil and in Sao Paulo in particular. Preparations for the conference have taken a great deal of time and energy, but it has all been worth it. To see over 330 delegates and to be able to showcase the situation of deafblindness in Latin America is a privilege.

She remembers when there were very few services available in deafblindness at all. There are still great challenges as only 30% of all children with special educational needs are enrolled in education, however Brazil has made great strides in a short time. Working with the Ministries of Government is making a difference to the lives of so many people with deafblindness.

‘Nina’ also won the Hilton Perkins Distinguished Service Award! Congratulations to her and long may her commitment to this work continue.

Christine ‘Coco’ Roschaert, Tactile the World, Nepal

Two deafblind people laughing as they communicate by touching hands ©CBM
Coco sharing stories with Lex Grandia (President of WFDB)
"I have had a wonderful time at the conference. One of the highlights was meeting Lex Grandia (President of The World Federation of the Deafblind - WFDB). I was in touch with Lex over three years ago when I went to Nigeria to work in deafblindness. I did not communicate much with him after that, but I will be in touch with him regularly in the future.

"I am very grateful to the support of CBM. I know that CBM does great work in supporting education and advocacy for deafblind people. I worked as a volunteer with CBM in Nigeria. Meeting the CBM team in Durban, where I was a keynote speaker, was very fortunate. I am really grateful for the support I have received from CBM in attending this conference. With this opportunity I have met so many great people, international leaders in the field of deafblindness with DbI. It was privilege to join the CBM AWG for their meeting too. It’s important that organisations listen to the voice of people like me who live as people with deafblindness. We know what the best practices are.

"All this has given me great contact for when I go to Nepal to establish the Association of Deafblind people in Nepal next week. I am already in touch with CBM in the region and look forward to working together to improve the lives of deafblind people in the country.

"As a deafblind person myself, I know the importance of communication and mobility. One of the key messages I have is the importance that educators must have a good level of communication with the deafblind person. Being deafblind can be very lonely, but communication through any tactile means opens up a new world of contact and empowerment.

"On my last visit to Nepal, I came across a 55 year old man in a village. He was poor, poorly dressed and unclean due to sitting in his own excrement. When I asked his family why they did not teach him how to communicate and find the toilet, they said he could not. I showed them how they could. In a very short time, he understood his signed name and the way to find the village toilet. The man was covered in cuts and bruises as he banged into things in the village. When I go back I am going to visit this man and expect that now the family and community will have taken steps to communicate more with him and that he will be clean and proud.

"This conference has given me a great deal of hope in the future for deafblind people."

What is 'deafblindness' ?

Coco (see below) lets people know her situation
'Deafblindness' combines - in varying degrees - both hearing and visual impairment. Deafblind people communicate in many different ways determined by the nature of their condition, the age of onset, and resources available to them.

Lex Grandia (President of WFDB)

Two men and a woman talking during conference ©CBM
From left: Ann Thestrup (WFDB); Lex Grandia (President WFDB); Joseph Shiroko (Programme Co-ordinator of the Brian Resource Centre in Kenya). Everyone shared in the delight of Lex receiving the DbI Distinguished Service Award.
Lex Grandia is one of those people you feel privileged to meet during your life time. He is President of The World Federation of the Deafblind (WFDB), but also a member of the CBM Advisory Working Group on the education of people with deafblindness.

On 12th October, 2011 the Lex will act have acted as the international voice of persons with deafblindness for 10 years. He has been instrumental in including the rights of persons with Deafblindness in the UN Convention on Rights of Persons with Disabilities.

Lex said that meeting people from different countries was the joy of such a conference. Many people communicate by e-mail, but having the opportunity to meet them is a joy. One of the meetings which gave the greatest joy was the meeting of people focussed on working in low and middle income countries. Over 20 people attended and several of the organisations involved gave a commitment to take this work forward. There are many organisations working in development; we need to collaborate to see a difference being made.

Lex also took great pleasure in being given the DbI Distinguished Service Award, but recognised that none of his work would be possible without the support of Ann Thestrup, his partner in work and life. He is the first person with deafblindness to receive this award.

Lucia Piccione (ICEVI Latin America and CBM Advisor)

A woman and a man - the woman is talking into a microphone ©CBM
Lucia Piccione (ICEVI Latin America and CBM Advisor) and William Green (Past President DbI)
Lucia Piccione has been a CBM Advisor in the Education of persons with Visual Impairment for many years. She has been instrumental in developing services in the area of visual impairment throughout the region as part of her career. In addition she is also an advisor in deafblindness. She currently works for CBM Latin America as an Advisor for part of the time, and the other half she works for ICEVI (International Council for Education of People with Visual Impairment, Latin America). Lucia was invited to give a presentation to the DbI General Assembly on the work of ICEVI in Latin America.

When asked what she got out of the conference, she said

"It’s a great opportunity to bring together members of ICEVI throughout the Latin American Region. I think that every day we have had meetings. Many of the members are involved in working in the area of deafblindness too.

"CBM works closely with Perkins International and Sense International to develop work in the area of deafblindness, so this too has been good. I am very pleased to be a member of the CBM AWG on deafblindness. However of a practical level it’s so good to be in a conference where most of the participants communicate in Spanish and Portuguese."

Sian Tesni (representative for CBM on the DbI Council)

Three people standing talking ©CBM
Siân Tesni (CBM Senior Education Advisor and Co-ordinator of the Advisory Working Group (AWG) in the Education of Person who are Deaf , Hard of Hearing and Deafblind (EDHD), (middle of photo) speaking with Namita Jacob (Educational Specialist Asia / Pacific Programmes for Hilton / Perkins International) on the left and Uttam Kumar (Manager – Programme) on the right
"For me, the primary aim for attending the Conference was as representative for CBM on the DbI Council. Whenever there are such opportunities, I find it very useful to network with representatives from different agencies involved in the same as field as possible. In addition, it’s always a fruitful opportunity for the AWG on deafblindness to meet as well. We meet several times a year via the internet and regularly communicate by e-mail, but a face to face meeting brings another dimension.

As ever, I am encouraged by the dedication and motivation of everyone I meet through DbI. In this conference there are many things that remain with me including:
  • The dances of the Blind and Sighted Ballet Company. This was a dream realised for one young woman. The message - all people can reach their potential and see their dreams realised with the right support and encouragement.
  • The plenary presentation given by Namita Jacob. Her presentation was very down to earth, highlighting the realities that are faced by persons with deafblindness in low and middle income countries. She pointed out that in high income countries, we often talk of intervention being a life-long process, however the realities in our work is that we often have to be able to give that whole life-time intervention in one session. Many families never return for the follow-up for a whole host of reasons, including lack of funds or distance to travel for regular support. However she also gave great hope in her presentation of following over a number of years when a child who is deafblind is given regular, appropriate support by a specialist team.
  • The plenary on parental / family involvement was very touching. The message was clear, that behind every successful story there is a family who is dedicated to providing the best for their child’s complex and unique needs.
  • The stories from people who are deafblind themselves were inspiring. Just like with all people, their wishes for the future were for successful relationships with family and friends, an opportunity to work and have their own family.
  • Meeting current and previous CBM partners. One such success story is that of SOCIEVEN, Venezuela. In this conference Maria Luz Neri de Troconis director of SOCIEVEN was proud to show her appreciation for all the support that CBM has given them over the past years. SOCIEVEN is a Civil Association charity established on 20 January 1995 to promote action on behalf of deafblind people of Venezuela and their families. Attendance at the DbI Conference was a family affair. Maria Luz’s daughter Anabella Troconis Neri is an actress. Recently she and a group of actors produced a video which highlights the needs and possibilities for persons with deafblindness (for more details go to www.anabellatroconis.com). In Venezuela the showing the video as part of an awareness campaign has resulted in many more people with deafblindness, particularly children coming for early intervention and support.
  • Another encouraging activity was the convening of all organisations involved in deafblindness in low and middle income countries. Through the DbI Council, the ideas shared amongst the participants will be taken forward.

External links

'CBM' in sign language

CBM in sign language

Finger Braille

An example of tactile communication with persons with deafblindness


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