We must take this position because it is the right one


Photo 1 - Alex Garcia speaking in the Federal Public Persecutor, RS

Alex Garcia a Deafblind Person and a Person With a Rare Disease, The coordinator of the core regional for Rio Grande do Sul at the Baresi Institute and President and founder of AGAPASM, and Enio Luiz Garcia, the President of the county council for the Rights of People With Disabilities from São Luiz Gonzaga, collaborated with the public hearing held in the auditorium of the Attorney General's Office, in Porto Alegre on June, 11th, whose aim was the structuring of the National Policy for the integral attention in Clinical Genetics.

After the announcements of the authorities from the table, the participants had the opportunity to speak and at this moment Alex Garcia had a great prominence. "I was there to defend the people with Rare Diseases and also the urgent need to have a public policy for Rare Diseases. I did not omit myself from my duty as a human being. By observing the comments from the authorities from the table I remembered of Martin Luther King Jr. when he said: 'Cowardice? He asked, is it safe? Convenience? He asked, Is it political? Vanity? He asked, is it popular? However, conscious, He asked, is it correct? And there is a time when a person must take a position which is not safe, nor political, nor popular, but this position must be taken because it is the correct one'. So at that moment I I clearly positioned myself against the medical model, a model and culture which are about the normal. That is, for this model our bodies only are socially valid if they can be fixed. Our rights for a decent life are denied People With Rare Diseases live with their conditions which are not simple but we are completely sure that the medical model and the culture of the normal body have increased a lot the problems because they have shown us only a door , a way: the cure or nothing. So, we must take another position because it is the correct thing to do. We, from the Baresi institute and all the people with rare diseases are fighting so that all the policies can be based on social models. A model which can value the person not his or her condition. A model which open new doors so we can live with dignity as we are", highlights Alex.


Photo 2 - Alex Garcia, The General Attorney, Ana Paula Carvalho de Medeiros and Enio Luiz Garcia

At the public hearing also participated Fernanda Falkoski, a Deafblind People Educator. Hugo Nascimento, the director of the Baresi Institute, Who also spoke in the event. Lourdes Salazar, mother and grandmother of Alisson Salazar, a Deafblind Person and Luize Shons, the mother of Alex Heck, a Person with Rare Disease and a Deafblind Person.


Photo 3 - Alex Garcia and Fernanda Falkoski. Fernanda is typing the public hearing for Alex Garcia

They also participated of the Genetics Brazilian Seminar held at the Events Center of the Plaza Hotel in Porto Alegre. According to Alex Garcia, "on June, 13th we had a booth from the Baresi Institute which was available for our associations. The booth was visited by a great number of people and Alex Garcia and Katia Ogawa, the president of ABOI (Brazilian Association of Osteogeneses Imperfecta and People with Rare Diseases), Hugo Nascimento and Enio Luiz Garcia", were there.


Photo 4 - Enio Luiz Garcia. Alex Garcia and Katia Ogawa. Jo Nunes. Cassia Schiffer Rogero. Cristina Cagliari and Hugo Nascimento.


Alex Garcia
Deafblind Brazilian. Coordinator of the core regional for Rio Grande do Sul at the Baresi Institute. President of Agapasm - www.agapasm.com.br. Specialist in Special Education. Writer. II Sentidos Award Winner. Honorable Rotary Club member - Rotary Club in São Luiz Gonzaga-RS. International Leader for the employment of people with disabilities - Professional Program on International Leadership, Employment, and Disability (I-LEAD) - Mobility International USA - MIUSA. Member World Federation of Deafblind - WFDB. I write articles for the Reação Magazine, and also to Planeta Educação and I am a counceler of Rede Educativa Mundial - REDEM