Between the 21 to 24 May (Thursday to Sunday), exactly one week ago, I had the honor of participating as a speaker (panelist, in my capacity as representative of the Americas in the Council of Inclusion International) in the company of María Victoria Orozco and Monica Cortes, in the 7th Down Syndrome Congress, which was held in the Convention Center Pipa Tigre, located in the town of Tigre, Province of Buenos Aires, Argentina. This event was co-organized by the “Tigre for Inclusion” Foundation, sponsored by Inclusion International and the IAS RED (Inclusion Network Argentina Down syndrome) and was attended by delegations from Chile, Peru, Uruguay, Colombia, Paraguay, Mexico, Germany, Ecuador and local self-advocates from Argentina.
During this Congress, I was invited to talk about my experiences on the right to decide, my election as representative of the region of the Americas on the Council of Inclusion International, and the importance of supported decision making. I participated in two presentations: the first one was a workshop on the “Right to Decide” together with Ines Elvira Escallón, to emphasize on the global report “Independent but not alone” and the progress that has been made; while the second one was aimed to present personal experiences related to the topic.
Theme of the event:
“Participating without barriers, breaking down myths and prejudices around people with Down Syndrome”
Under the leadership of President Dr. Claudio Esposito, with the participation of the national Minister, Mr. Sergio Massa and with the slogan “I include … And you?” The purpose of the Congress was to present and discuss the daily problems and challenges faced by People with Down syndrome-and people with intellectual disabilities in general to be included in all aspects of their community and to be recognized as active members of society; the more specific topics were about participation within the family, school and society, the barriers we face to achieved inclusion, the importance of complying with the UN Convention on the Rights of Persons with Disabilities and the creation of new laws and social inclusion policies with the support required.
They were four intense and busy days, but at night we also had the opportunity to have fun. I could not attend the welcome dinner hosted by Inclusion International on Thursday night after the pre congress, but I got together with everyone during the cultural activities: a visit to the Museum of Art (Friday), a presentation of tango show in the Theather Porteño from Buenos Aires (Saturday), and ending the last day in the afternoon with a ride on a catamaran for the Rio de la Plata (Sunday).
During the course of the event and through various panels, we discussed issues related to sexual and reproductive rights, recognition before the law and legal rights, universal inclusive design and inclusive education and employment, recreational and cultural activities, the importance of role of families and friends as natural supports, social action programs and the necessary adaptations required for people with disabilities in their everyday lives, without being excluded. We also attended workshops with the same self-advocates along with their siblings, children and the elderly. Speeches were delivered by Dr. Klaus Lachwitz, Raquel Jelinek, Elena Dal Bo and self-advocates like Vanessa (Chile) Natalia (Uruguay), Emmanuel (EU), Marco (Ecuador) and Ana Laura (Argentina). Pablo Pineda (Spain) was scheduled to appear, but due to problems of force majeure he could not come. But he sent us a video message supporting and greeting us.
During the event, there were exhibitions of posters made by organizations of persons with Down syndrome, as well as the sale of books with images of support and sport groups that have participated in many events.
LEARNING AND EXPERIENCES:
During the conference I had the opportunity to acquire new skills and knowledge, to expose the issues that I will be dealing with in relation to my life and my experience as a self-advocate. Seeing the presentation of Ana Laura Cali, one of the self-advocates, gave me the confidence to introduce myself and talk spontaneously without sticking to the script too much. With other friends, such as Valeria, Natalia, Marco, Juan Cobeñas (whom I met back in 2011) and other self-advocates, I could share my experiences and listen to theirs as well. I listened to stories of people like Melissa, who has shown that we can achieve the recognition we deserve beyond the diagnosis and that much remains to be done to convince our governments to enforce our rights. Uruguay’s presentation highlighted the organization “Youth and inclusive development: Opening and expanding” where the main feature is not their disability but their youth, so people with and without disabilities are part of this initiative.
Within the space, several of the topics discussed were:
- World Report “Independent but not alone”: both Ines Escallón and Lachwitz Klaus emphasized the need for support for people with disabilities and their families, identifying obstacles from the environment, the advice of legal professionals, the importance of supported decision making and the impact that occurs after taking such decisions, self-advocacy as a basic tool, the role of organizations and benefits to all parties.
“Autonomy does not mean loneliness”: We need to think of a universal and inclusive design that benefits people with and without disabilities, to educate and raise awareness of respect for others, making alliances with organizations and families to develop autonomy in people with functional diversity, build policies on universal pension and other rights essential to building a fairer country.
- Sexuality: We have sexual and reproductive rights that allow us to enjoy a healthier life, but with great responsibility and preventing we suffer any abuse. For that, parents should put aside those prejudices and fears they have about the topic and be made aware about our needs and desires. We talked a lot about dating, body development, enjoyment during sex, fight against the image of “eternal children”, etc. And it was a very agitated discussion.
- Education: We did a review on education, medical history for people with disabilities in their educational process, and how to achieve accessibility (universal design, easy language) changing the education system at all levels: primary, secondary, superior and permanent.
- Inclusive experiences: The stories I heard from different self-advocates showed true inclusion: some of them managed to go to mainstream schools with support, others found in sports and fashion a way to develop with others, and others have worked in media (radio, on TV, in music) or as local councilors becoming communities leaders of change.
I got to meet many people from other countries like Valeria and her organization “Leaders with thousands of capabilities,” Natalia and her work within their community, Emmanuel and his next violin concert with the Infanto Orchestra – Youth of Tiger. And at the time of my presentation, some praised the clarity of my speech and my way of presenting (Agnes, Vicky, Monica and I adjusted a little bit my presentations with text and some images to avoid getting the audience too tired). In addition I made contact with other people like Maria de los Angeles, representative of an organization in Honduras. Another thing I enjoyed was the food we got for lunch, tasty and huge.
By witnessing all these examples, I think it is necessary and important to spread the self-advocacy in each country and worldwide. If we rely on the mass media through solid projects (radio, TV, newspaper sections, blogs, etc.) we develop initiatives within our communities (closure of institutions, universal design and remodeling education, recruitment partnerships with business organizations), and we will achieve an impact for the development of our society, benefiting several parties and strengthen our voice.
Therefore it is necessary to reach out to parents, educators, political leaders and the community in general to let them know we’re here and to remind them that:
“Places where people with disabilities are fully included show how much that society is advanced”
Oh, and another very special recommendation for future events, without offending the organizers, is to respect the starting times. Considering that some people make great efforts to assist, because of the delays valuable content is lost, and also thinking that some of us get tired a little faster than others and our attention spans are shorter and the delay undermines these conditions.