“There is a need to work across the board to protect families with a disabled member, regardless of zip code of birth.” This was one of the main conclusions of the table “Voices that inspire: challenges and challenges in … the field of disability”, organized by the Pozuelo City Hall and hosted by ABC Familia journalist, Carlota Fominaya.
During the meeting, framed in the Disability Weekaspects related to the human rights of these people, their personal autonomy, their education, their sports, their leisure activities, their professional inclusion or their full social participation, among others, were debated. “We know that when we open the doors to diversity, we create opportunities for everyone,” said Eva Cabello, the township’s family and disability care advisor.
The event included speakers with different industry voices, such as Olympic swimmer and Princess of Asturias Sports Award 2021Teresa Perales; Mar Ugarte, vice-president of the Spanish Council for the Defense of Disability and Dependency (CEDDD); Pablo Siegrist, director of the Jérome Lejeune Foundation, and Gonzalo Bermejo, president of the Syngap1 association and author of the book “How to learn from your child’s disability”.
The MIRA Cultural Center in this city of Madrid opened its doors to associations, families and the general public, during a day dedicated to analysis and awareness of the importance of building a truly inclusive society. Eva Cabello Rioja opened the day with a clear message: “Inclusion is not an act of generosity, it is a duty that we have, as a society, to guarantee the rights of all citizens. This space for reflection is crucial for developing new strategies that promote dignity, autonomy and the full participation of all.
The first speaker was Gonzalo Bermejo, father of a daughter with the rare disease SYNGAP1. Bermejo highlighted the emotional impact of the diagnosis and explained how it marked a before and after for his family. “The diagnosis is one click: you finally know where to go,” he said. He emphasized that while this is difficult, it also allows us to understand the situation and begin to access specialized resources and support that, without a clear diagnosis, are difficult to obtain. “It helps you deal with uncertainty,” he concluded.
Bermejó also reflected on the emotional challenges families face in the diagnosis process. He spoke about waiting times, frustration and the need for psychological support to get through this period and highlighted that “many families feel alone due to the lack of initial guidance and the difficulty in accessing clear and up-to-date information on available resources.”
The vice-president of the Spanish Council for the Defense of Disability and Dependency, Mar Ugarte, shared the importance of associations as a bridge between families and professionals. He explained how these entities support those who receive a complex diagnosis, offering them not only emotional support, but also information and practical advice on financial aid, educational resources and administrative procedures. One of the most relevant points he mentioned is that many families are unaware of the existence of aid such as CUME, a key resource for reconciling family and work.
Finally, Paralympic medalist Teresa Perales shared her personal experience of resilience and improvement. He spoke of the strength needed to face difficult situations, especially in the case of those caring for disabled family members. “It’s not a drama. There are two options: stay or move forward,” he stressed. His message focused on the importance of also providing support to parents and guardians, who often remain behind and need recognition and support.
The Jérôme Lejeune Foundation offered information on the importance of carrying out genetic studies and anticipating possible health problems linked to certain disabilities. Siegrist particularly emphasized “the need for families to access these studies in an accessible and early manner, which can make a big difference in the quality of life of the people concerned.”
During the meeting, topics were put on the table such as the need for a system that accelerates access to diagnosis and early care, as well as the importance of supporting families from the first moment. Speakers agreed that while progress has been made, there is still a long way to go for institutions to provide adequate and sufficient resources.
Finally, journalist Carlota Fominaya took the stage to talk about the invisibility of disability in the media and the need to communicate responsibly and sensitively. He insisted that the media has a duty to give space to these stories and not relegate them to the background. “The things that matter are read,” he said, emphasizing that it is necessary to tell these realities and that conferences like this are organized to “generate real changes in society”.