Circa 2005
Emerging young leaders in the disability community share one overriding similarity: the world may be big, but their goals are bigger. Earlier this year, a handful of young adults aged 18 to 33 seized the opportunity to share their insights about the direction of the disability movement with established international disability leaders of all ages. The dialogue was welcomed by the older generation who openly expressed the need for new leaders to whom the baton can be passed in forthcoming years. Two conferences—the 8th International Congress on Including Children and Youth with Disabilities in Community Life, and the Rehabilitation International World Congress—were held back-to-back in Stavanger and Oslo, Norway, respectively. Each conference placed specific emphasis on including young adult leaders in discussions about issues directly affecting them.
“It’s essential that we have a voice in decisions that directly affect our lives,” said Eric McDawutey, the young adult representative for Ghana at the International Congress, who is deaf. “And when we have the opportunity to share with adult leaders what we are really experiencing and what we think needs to be done about it, we welcome that opportunity.”
The International Children’s Congress has been in motion since 1992, and national and community leaders around the world have been gathering every two years to share policies and programs that promote the inclusion of children and young people with disabilities in the everyday life of the communities in which they live. The first five congresses were held in the United States, the sixth in Canada, the seventh in Argentina, and the eighth in Stavanger, Norway. The theme of the 8th Congress, toward full citizenship, reflected the goal of inclusion that materializes into full participation in every part of society for children, youth, and adults both with and without disabilities. The Congress examined what has been achieved and what still has to be done to reach this goal of full citizenship in different parts of the world.
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The 8th Congress addressed the important role that families and communities can play in developing national policies and programs to establish local systems of health, education, employment, and social services for children and youth with disabilities in their home communities. “There are specific roles for all people to play, and asking for help is not only a sign of strength but what we need to do to get things done for our children,” said Jennifer Cernoch, director of Family Voices, USA.
Statistics provided in A World Fit for Children, a document published by the United Nations in 2002, showed that there are approximately 150 million children with disabilities around the world, and 90 percent of those children do not receive an education. “This is a major concern,” said Phyllis Magrab, director of the Center for Child and Human Development at Georgetown University, USA. “International knowledge gives us domestic leverage, and we need to go to work now to include these issues and these concerns as international goals. Our children with disabilities must be mentioned in public documents now; otherwise, for the next 10 years the battles will be extremely difficult.”
The topics of education and employment took precedence in the conversations exchanged between leaders of all ages and nations in Stavanger. “All pupils are of equal worth, but none of them are alike,” Kristin Clemet, the Norwegian minister of education and research, stated. “And though budget and monetary constraints are holding some of us back, we need to remember that, though education may be expensive, ignorance is even more expensive. And because we are sometimes attracted to that ignorance because of its simplicity, we need to think ahead as to what the long-term outcome will be for ourselves and for our children.”
While sessions about general youth issues such as education and socializing were provided for the younger audience at the conference, many of the young leaders also tackled issues such as heath care, employment, benefits and technological assistance. “We may be young people,” said Rashaad Sayeed, a young adult leader with a disability from Canada, “but we are also leaders. We think about youth issues, but we also know that we need to start thinking about adult issues now if we are ever going to be able to be ahead when the time comes.”
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The 8th International Congress in Stavanger was followed by the Rehabilitation International (RI) World Congress in Oslo. The World Congress, with over 1,000 people in attendance, focused on the theme rethinking rehabilitation. Whether participants lived or worked in industrial or developing countries, and whether they were involved in rehabilitation as users, practitioners, researchers or policy-makers, everyone’s aim was to exchange ideas and practices to improve the quality of life of people of all ages with disabilities. The conference addressed these issues through three primary perspectives: a user perspective, a human and civil rights perspective and a multicultural perspective.
Sixteen young people from six countries around the world, with disabilities ranging from physical to cognitive to emotional in nature, had a head start at RI’s World Congress with a three-day retreat prior to the opening ceremony. They used this retreat as an opportunity to compare differences in the definition and experience of disability from the different perspectives of their home countries. As a result of their discussions they identified the issues facing the disability community that required the most attention and effort of emerging leaders as inclusion, education and rehabilitation. They developed a 45-minute breakout session to present at the Congress, and also chose three of their peers to present these priorities at the closing plenary session.
“The voices of youth are important voices to hear,” said Lex Frieden, immediate past-president of Rehabilitation International. “It’s important to know what they think so we know what they need, and it’s important to hear their ideas so we know how to begin turning some of the opportunities and responsibilities over to them.”
The youth leaders agreed that they are ready for this exchange of ideas and sharing of responsibility. “I think that this conference will provide many leaders with the knowledge that younger people have good ideas to share,” said Ana Castillo, a 23-year-old representative from the Dominican Republic who experienced a stroke in her adolescent years. “I am honored to be able to talk with people who really make things happen, and I am excited to share with them how excited we young people are to make things happen as well. There is a lot to be learned.”
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Planning for future conferences is already in motion, ideally with young people with disabilities from a variety of countries contributing to this process. The next International Children’s Congress, which takes place every two years, is scheduled to be held in Washington, DC, hosted by the U.S. Department of Health and Human Services through the partnership of an American planning team and an international steering committee. Rehabilitation International hosts a conference every four years. Its next World Congress will be in Canada. For more information on either project, visit their websites.
by Betsy Valnes
About the author: Betsy Valnes, an active member of the disability movement in the United States and a young adult with traumatic brain injury, was selected by the U.S. Department of Health and Human Services to attend both international disability conferences in Norway. She actively serves as the vice chair of the National Youth Leadership Network and as an ex officio/mentor with the National Council on Disability’s Youth Advisory Council. On an international level, she contributes to the National Clearinghouse for Disability and Exchange and the International Duke of Edinburgh Award Scheme, advocating for inclusion for youth with disabilities and at-risk youth.
