Vice Presidents’ Messages
Bernadette M. Kappen reports:
The 2015 year for DbI has been an exciting one. The World Conference in Bucharest was an opportunity for individuals to meet and share knowledge as well as joining with colleagues from the World Federation for the Deafblind (WFDB). This partnership is so important to the work of DbI. Many of the members of DbI are working with children and young adults and the connection with WFDB helps bridge the gap from school to adulthood.
In every field, professionals are talking about succession planning. DbI is no exception and seeing three young professionals receive awards at the World Conference helps us look to the future and the continued growth of DbI. The Young Leadership Award was presented for the first time in Bucharest and I encourage you to consider nominating a deserving individual for this award. As a professional, please talk to others about your work with individuals who are deafblind and help them see that working in the field is one of the best jobs anyone could have. We need to continue to bring qualified individuals into the lives of people who are deafblind.
Bernadette M. Kappen
Frank Kat reports:
Following the Bucharest Conference, there were several changes in the composition of the Board. This presents the perfect moment to ponder our strategic decisions and direction for the coming years, matters that we already touched upon during our meeting of the new Board in Bucharest. These were also some main points discussed at the recent meeting of Management Committee in London this past October.
I believe that DbI is a unique organization; one with great potential. In addition to organizing conferences and meetings and facilitating DbI networks, DbI is primarily a group of people who have a great deal to share with each other. Through our meetings and conferences we transcend institutions’ and organizations’ interests to achieve common goals. I should therefore like to use this opportunity to encourage all members (board members, network members, etc.) to use DbI as the opportunity to share. You and your organizations are great sources of expertise, experience and passion. Our networks and conferences are places where you can find each other to talk about challenges, issues and solutions, but we should also be finding each other throughout the year.
Let us resolve to use this enormous network more often, to query each other and exchange knowledge and ideas, perhaps about recent studies, technical and medical matters and practical matters of education. Let’s make a deal that any opportunity to support one another is used openly.
I could name a few countries where changes in the financial climate have made it necessary to make challenging decisions that have a large impact on deafblind people’s support. But I also know that all supporters, experts and organizations are looking for solutions. Wouldn’t it be fabulous if we shared more of this together? And this could be so easily achieved! On the back of each DbI Review there is a list of names and email addresses. Send a message, arrange a Skype meeting, let’s keep meeting with each other.
The future belongs to those who believe in the beauty of their dreams (Eleanor Roosevelt)
Learning from the Field
Marianne Riggio, Perkins International
Many international development programs are based in countries where there are comprehensive laws that mandate education for all children, regardless of their disabilities. The countries they serve are not always so fortunate.
The United Nation Sustainable Development Goals1 give every country the aspiration to: ensure inclusive and equitable quality education and promote lifelong learning opportunities for all. Achieving this goal for children and young adults who are deafblind is a great challenge since more than 95% of this population is currently left out of educational services.
International Non-Government Organizations (INGOs)2 who have the mission to support efforts in countries around the world where education for all children is not yet a right have a lot of work to do but must proceed with care. Often times we operate from the framework of our own experiences, imposing our own country models in places that have a very different landscape and culture.
We need to understand the reality
The early pioneers in our field like Jan van Dijk3, developed approaches for educating children with congenital deafblindness that were very much grounded in our ability to join them and try to understand their perception of the world.
While the population of children with deafblindness has changed, from the days of Helen Keller and Laura Bridgman4 to children born during the rubella epidemic over 50 years ago to the new generation of children with CHARGE and other very unique and complex diagnoses, it reminds us that we must reevaluate the reality of each child every day. Even though it is not totally possible, we must try to step into the experience of our students and how they perceive the world. By doing so, we will find the best ways to communicate together and to create meaningful learning opportunities that will open up the world to them.
In professions like law, medicine and education, certain fundamental practices that are at the core do not change. When we think back to the days of Helen Keller and Anne Sullivan, we are reminded that no matter how advanced our thinking becomes and how advanced the technology, we must still first build a relationship with our students and provide ongoing opportunities to build direct social communication – Just the same as mothers and their infants have always done.
Our interactions with people who are deafblind are very personal. We would not cast off these core elements but rather enhance them by coming up with creative ways that will broaden their life possibilities. An example of this can be seen in the technology that has enabled people who are deafblind to have the same access to internet communication as people who are sighted and hearing. What a boon this has been in minimizing isolation for so many.
Throughout the years, the work of Perkins International5 and other INGOs6 in the field have sought to help find those local solutions to challenges faced by individual programs and the larger systems that serve children who are deafblind.
The pioneers of the work everywhere in the world were teachers and parents who operated on their own passion to offer access to education for children who are deafblind. Many began with no formal training but knew it was the right thing to do. Many had acquired information in a variety of ways and have encountered incredible challenges in their path. We should all be inspired by these individuals who have really shaped all of the work in our field.
Even today, where services are still being developed we have to open ourselves to the realities of these countries before we jump to help them. We must immerse ourselves into the life of individual schools and cultures with very few resources. At times it seems daunting, but this process provides us with the valuable opportunity to live the reality and help work out solutions that will be meaningful. It is a very enriching experience to step away from all of the material and professional resources that are available in developed countries and step back into the core of what it means to teach children with deafblindness.
As we support our colleagues in the development of services, our role becomes one of encouraging them not to try to replicate schools from the west, but in a way, give them permission to draw from the richness of their own surroundings and cultures.
When we try to replicate our own systems in another culture, it often just doesn’t feel right. An example can be seen in a deafblind unit near the coast of Kenya. In the Kenyan culture festive music and drumming are part of their traditions. We needed to let the teachers know that it was ok to bring music and drumming into the classroom. Once the drums were brought into the otherwise quiet classroom, circle time came alive and staff and students were fully engaged and happy.
One of the great challenges for children who are congenitally deafblind is in understanding the world that surrounds them. The strategy of teaching in natural environments and keeping to the pace of our students and having them fully participate in every activity are considered best practices that sometimes are difficult to embrace in modern western schools where the pace is more hurried.
As we support schools, we come away reminded that sometimes a little bit less can be more – as long as it isn’t too much less – and as long as teacher and parents are given appropriate training and support. Often, teaching children in natural environments is the only option. Teachers cannot afford specialized teaching materials. They cannot use commercially made materials that often don’t exactly meet the specific learning style of a child. There is no rush to keep a tight schedule of classes so teachers can adjust their pace and ensure that children have the time necessary to fully participate in tasks.
I would like to share an example of how our partners, with our support have managed to provide very meaningful education for their students. At Bhakti Luher in Malang, Indonesia7, there is no Walmart, rather, there are often small kiosks in villages where people buy their food and household supplies. At this longtime partner of Perkins International, the children learn many skills through the real life practice of making items such as shaved ice and snacks and selling them every day within in their community. They are providing a real service that makes them valued members of the community, while they are learning valuable social communication and independent living skills, concepts, and a sense of belonging. They are also bringing in financial resources that help defray program expenses.
In order to support the growth of high quality educational services we all must be challenged to go to the next level. The next level comes from building communities of practice where professionals and families alike can come together to build their own momentum and evolving best practices. An example of this can be seen in Voice and Vision in India8, where professionals from programs around the country have joined together to train teachers, families, and CBR workers in addition to developing culturally and linguistically accessible materials.
There has been much debate in the field of international educational program development about the merit of bringing teachers out of their own environment for training. It has been our experience in working with the Educational Leadership Program9 that bringing people outside their culture to see mature multifaceted educational models has the benefit of giving an already good teacher confidence and additional competence to critically think about how to take their programs to that next level and to think outside of the box about creative solutions to the challenges in their home countries.
Another example in Latin America, Perkins International in partnership with the Catholic University of Cordoba (Universidad Católica de Córdoba)10 has addressed the worldwide challenges of transition to adult life through an international online training course that brings together parents, professional, employers among others that will to push their systems to come up with creative solutions.
Reaching the Unreached
In order to establish services for children and young adults who are deafblind, understanding the landscape is crucial and no one understands the situation better than those who live there. To do this I want to share a couple of stories of places where we have worked that exemplify how we must work within the reality of our partners.
Some of you may be familiar with Community Based Rehabilitation (CBR)11. It was first initiated in Asia thanks to the work of Bob Jackle of CBM (Christoffel Blindenmission)12. Simplistically, CBR is a model that was developed primarily to help adults who are blind establish themselves as working and contributing members of their home villages. The CBR worker helped the person who they were serving settle in meaningful work, gathering the support needed from their family and other members of their community who would receive training.
This idea of reaching out to people in their home communities caught on like wildfire throughout Asia and is spreading into other regions of the world. In the process it has also been modified to meet a broader need.
As people in the blindness field saw the reach and value of the CBR model, it was adapted by visionaries such as those at Blind Peoples Association (BPA)13 where a group of visionary professionals had established a school program on their campus in Ahmedabad for children with multiple disabilities but they faced many challenges. One of the big challenges was finding children in remote areas of Gujarat and providing them with needed services.
Through the wisdom of the BPA leadership they decided that they needed to train CBR workers in the basic competencies of working with children with multiple disabilities so those people could identify children in the subregions of Gujarat and then work with their families to provide learning opportunities.
These CBR workers began to carefully document information about the children with multiple disabilities and worked in defined areas to offer guidance and support including their goals and results. Their presence in often extremely remote villages drew attention and support to the needs of the children.
In one Jain community where BPA had a presence, the project, brought to light the needs of children with multiple disabilities and resulted in the donation of a place in the temple compound where children with disabilities and their families could meet together and receive services. The same held true in other communities and gradually, with some support from government, what came to look more like school programs began springing up around Gujarat. When children attended these programs, small and informal parent groups began to also emerge.
In the Philippines, where many children are also served using the CBR model, PAVIC14 which is the very strong organization of parents of children with visual impairment identified the lack of availability of trained occupational and physical therapists as a significant problem and as parents will do, they found a creative way of solving it. They brought families together on family weekends where therapists could evaluate children and then show their families what they could do at home.
Working in Children’s Homes
In many parts of the world, there is very little support given to families with children that have disabilities and particularly those with deafblindness and multiple disabilities. In part, this is due to the lack of awareness in medical communities but also from the lack of financial resources to support comprehensive early intervention, school and adult services. This has resulted in many children being placed in children’s homes. It is often the perception that children’s homes or orphanages just provide care and not education.
Leaders of children’s homes in Eastern Europe, Russia and other parts of the world have proven this notion very wrong. These people have shown their commitment to offering high quality educational services and have become the centers of excellence in their countries in the education of children with deafblindness and multiple disabilities. They have reached out to engage families in ways that will encourage them to keep their relationship with their children. They run family camps and support family networks. In addition, many are beginning to provide direct early intervention services so children will have a stronger likelihood of remaining in the care of their parents.
These are just a few examples of the ways that people have just worked with what is their reality and found the most dignified of solutions. For those who are lucky enough to be in positions where they can support and offer guidance in the development of services for students with deafblindness, keep your ear to the ground and learn about the culture and landscape; keep the fundamental values that you hold firm, but also keep an open mind to the possibilities that suit the culture; help facilitate the dialogue about needs and solutions – you will learn a lot; finally be a catalyst to helping partners find creative solutions to challenges that will take them to the next level.
1 (Goal 4) https://sustainabledevelopment.un.org/sdg4
5 www.perkins.org. Perkins School for the Blind is a large corporate member of DbI.
8 Perkins National Resource and Training Centre for Children with Vision Impairment and Multiple Disabilities, including Deafblindness. (www.voicevisionindia.org)
9 www.perkins.org/international/elp. The Educational Leadership Program is Perkins International’s flagship teacher training program.
11 https://en.wikipedia.org/wiki/Community-based_rehabilitation. The aim of community-based rehabilitation (CBR) is to help people with disabilities, by establishing community-based programs for social integration, equalization of opportunities, and rehabilitation programs for the disabled.
12 CBM is a large corporate member of DbI.
14 Parent advocates for the visually impaired children (icevi.org/publications/educator/.../educator-july-december_2002p15.htm.https://www.facebook.com/Parent-Advocates-For-Visually-Impaired-Children)