The interview that Oliver García Grillo did in Diario de Avisos in September of last year, in which he was encouraged to tell how he faces the day to day with the Crohn’s disease and being ostomizedIt was a before and after in his life. It was the boost he needed because from that moment on, this young royal said to himself: “why not do more to make the reality of people like me visible?”
A question that led to Canarian Association of patients and relatives of Inflammatory Bowel Disease and Ostomy (Aceiio), created six months ago and of which is its president. He is the visible face but behind him there are many people who accompany him to fight for the rights of a group with a silent disability and still unknown that they believe that together they can do much more.
It was his mother who convinced him that it was he who had to be in charge because he is the one who has the bag, he is limited and therefore, the one who best knows the needs and impediments that people who undergo surgery suffer on a daily basis. operation in which an opening or stoma is made to safely expel the waste generated by the body.
“In the end, I am enjoying transmitting my experience to be able to help those who still do not adapt well to the stock market and are locked up at home”, confesses the young realejero, who at 22 years old shared his experience with the students of Fifth and Sixth of Elementary School Pérez Zamora, Los Realejos.
Some talks focused on raising awareness of Crohn’s disease -which in his case was discovered at the age of 8-, the reality of ostomized people, but also solidarity and empathy with others, beyond a specific ailment. An enriching experience that does not rule out repeating this school year.
He has not yet met with stomized children, but with young people who want to collaborate with Aceiio who, unlike other associations, also in the family, because they are his greatest support and therefore, they have to be well and have knowledge to be able to help.
It was on March 2, 2021 when a group of people came together to form Aceiio. The first fight between Oliver and his family began with the adapted bathrooms and specifically, those on the beach of El Socorro, ‘his beach’, which will soon be a reality and that is why Oliver decided to celebrate the half year of life of the Association with a visit to the works.
Toilets are a problem for all stoma patients. Not only is it essential that they are clean, but that they are easy and quick to access to empty or change the bag and clean the area before putting on a new one. This only requires an interior washbasin, a table in front of a mirror, a container for organic waste and the corresponding signage. No beach in the North of the Island yet has this type of services and it limits people with ostomies. Not to mention playgrounds, squares, town halls, institutions such as the University of La Laguna (ULL) or the two hospitals on the island.
He also asks that they do not have to pay to do a basic need, because many times these patients have to consume obligatorily to be able to use the bathroom of an establishment.
He knows that this objective is not easy because it would mean being open 24 hours a day, but an identification card for those affected, allowing them to enter and leave would make things easier. “At the same time, hygiene could be controlled and guaranteed, because only those who needed it would enter,” he stresses.
Aceiio’s work is beginning to pay off. He has already presented himself and spoken to the municipal officials of several municipalities to make them echo his request and adapt the toilets to people with ostomies.
In addition to the baths on El Socorro beach, there is one planned in the Basilio Labrador Sports Pavilion that displays the colors and name of the association on a poster, both on the outside and inside. Puerto de la Cruz has another one at the Bus Station and they are being adapted at Jardín beach and Punta Brava beach, while La Orotava has another one at the Senior Center.
In addition to the Valle Corporations, the Association has addressed Icod de los Vinos because “the idea is that they are not just a few municipalities but that more and more are added,” he emphasizes.
The adaptation of the bathrooms, which is also a right that ostomized patients and people with inflammatory bowel disease have, is just one of Aceiio’s projects that has more goals to achieve. One of them is to change the disability logo for one of visible and non-visible functional diversity.
Last year Oliver was admitted to the hospital twice. Due to the Covid-19 pandemic, no family member could accompany him. It was just before Christmas. Since he has been doing it since he was a child, he is already organized, he takes his console and his mobile phone to contact his family and friends. You have the advantage that the staff knows you. “The nurses came in and spoke to me. But when you are new, those four walls come down on you ”, he points out.
Even so, the last time, in June of this year, “it was very hard,” he confesses. “I looked fine but I was still admitted, the days went by and I couldn’t even leave the room to walk. It was enclosed in a few square meters. They were three interminable weeks ”, he says.
Understand that Covid-19 complicated visits, but in the end “loneliness also kills you. There are many elderly people who do not have a mobile and as a consequence, no contact with their families. It’s terrible”.
Thanks to the home admission, he managed to be cared for at home. They taught her mother to put her on the medication and she was relieved a little. “I did not know this part of the hospital, which seems fundamental to me, and which should be strengthened,” he says.
The extraordinary call for exams is also part of their struggle. Oliver spent a year studying Pedagogy and has been in Teaching for two. He only had three subjects left because he could not take the exams due to his hospital admission and that means a delay in his studies. “I think everyone should have a chance. If I can’t show up in January, I should be able to do it later, not wait for June ”. He makes it clear that “he does not want them to make it easier for him or to feel sorry for me”, but to have the same options as the rest of his colleagues “and if it cannot be on the same dates for health reasons, let it be on other dates” .
The young royal is completely convinced of the career he chose. He loves children, he does not doubt that being a teacher is his vocation and that is why he would like to train and take a step forward that also helps him in the Association. “Talks like the ones I gave at school are fundamental because they create awareness. And in the end everything is education, because in this society what is not known or is different becomes rare and this disease and the reality of ostomized people must be normalized ”, he insists.
On World Inflammatory Bowel Disease Day, he went with other members of Aceiio to the town councils of the Valley and also took photos with the Toscal Longuera women’s soccer team to show that young people, far from being “the burden of society” , as some consider them, they give their support and thanks to them, he has come out ahead. “They have stopped doing their things to go see me at the hospital or accompany me at home when I could not leave,” he says.
That is the next thing that arises; take a picture with his friends, all with a bag, and represent that young people support him, because without them he is clear that he would not be where he is.
A commercial promotion linked to sport, beyond any discipline
The sale of ACEIIO bracelets, sweatshirts, T-shirts and key rings, among other objects, not only help to give visibility to the disease but at the same time allow to raise some money so that the association, with just six months of existence, can face its expenses and undertake new projects. Its members wanted merchandising to be linked to sport because regardless of the discipline that is chosen, it is always good to practice it. “Even if you can’t make a lot of effort, you have to move and try to lead a normal life”, Oliver emphasizes.
