Raquel Estuniga is 47 years old, lives in Madrid and has 85% disability due to amyotrophic lateral sclerosis (ALS), which was diagnosed five years ago. He uses a wheelchair, barely moves on his own and communicates with a tablet on which he writes with the iris of his eye. Physically he is dependent, but he has always had a very active, persistent and loyal attitude and tries not to allow his illness to limit his being and seeing the world.
On May 5, he was called as an alternate in the municipal and regional elections of the 28th in his neighborhood, in the Retiro district of Madrid. He did not hesitate for a second to accept. He wanted to exercise his right to participate in elections and thereby give a vote to others like him. He enthusiastically shared his feelings with us: “I was called for the first time at the polling station and I happily look at it as a personal challenge and most importantly as a better way to gain visibility. A disease that affects about 4,000 people in Spain. We are alive, we want to live with dignity, and we will be able to do so if we are provided with the necessary resources.”
He arrived at the Los Olmos school on time, but so did the titular member, so the table was set up without Raquel’s participation. “Since I am here, I will wait until nine o’clock to be able to vote, because although I would like to be here today, I will stick to the fact that I was able to exercise my right. Vote and that will be another time. To be able to participate one day would make me feel very useful and integrated into society, which is very important to me.”
Access and assistance: essential safeguards
What would be necessary for him to be attentive throughout the day to a task like being a member of the polling station is the accessibility of the environment. When he called 010 to say he needed an adapted site, they told him to opt out. He did not accept the position of the administration: “All I need is help to manipulate the announcements and a plug to charge my communicator, and for that I have my carer.”
“Even though the Central Electoral College did not seem to be in favor of work, I did not give up,” he says proudly. Finally, the Zonal Election Board accepted their needs. “For me, this is not an excuse for disability to fulfill the obligations and rights that I have as a citizen. We talk about inclusion, but if we exclude ourselves, we cannot ask the rest of the citizens to behave normally,” he thinks.
Raquel is always accompanied by Elsa, her assistant and carer, who has been with her since January and told of their shared illusion: “I really like going with her to all the crazy things she wants to do. “He is very active… It would be difficult to be with him at the polling station all day, but it would be nice because I know it would help him feel complete.”
Several neighbors were surprised when they saw him in the morning, but those who know him well know that his situation is not a wall for him: “The president of the table already knew that I was going to be here, he is a neighbor. As for me, we have known each other since childhood, so if it concerned me, I would normalize it. As for the rest of the voters, many of them know me and I imagine they will be surprised and happy to see me there.” Nevertheless, she admits that not everyone around her has the same vision and there are those who think that the polling station is not an ideal place for Raquel: “The vast majority encouraged me and told me that it was very well done. They are proud of me and the minority who think I’m crazy,” he sums up.
“Politicians forget that disabled people also vote”
Estuniga has been involved for many years in the activities of the Madrid Federation of Associations of Persons with Physical and Organic Disabilities (FAMMA) and has always been a very active person, committed to politics and social causes. She notes that in addition to making ALS and people with disabilities visible, her other goal is to encourage others with the condition to break down barriers. And that they are encouraged, for example, to present themselves if they have to set up a polling station, as it happened to him: “If we want, we can and they will provide us with the necessary resources.”
There is no lack of desire, but there are resources. FAMMA President Javier Font affirms the importance of personal autonomy and asks administrations to contribute to effective programs: “Raquel’s case shows that people with high levels of addiction are also able and willing to protect their rights. But for that, everyone should have a personal assistant. It is very necessary to promote this support figure to be independent and even have a normalized life with accompaniment and now it is not being done. ALS patients have a great desire to live and actively participate in this type of event, which is so important for everyone,” he defends.
Font notes that something as fundamental as voting presents difficulties and barriers for people with disabilities or reduced mobility. And he explains that if there is anything that prevents people with these problems from exercising their right to vote, it is not their condition, but “the media and the environment, because 75% of polling stations do not comply with accessibility regulations.”
In terms of politics, people talk about disability every four years and progress on their rights is minimal, says Font: “Politicians often forget that disabled people and their families also vote. For example, in the community of Madrid there are 380,000 people who have some type of disability. In political calculations, this is a very important niche of votes, and it seems to many that they do not exist.”
Source: El Diario