The Canarian Association of Patients and Relatives of Inflammatory Bowel Disease and Ostomy (Aceiio) was born from the struggle of a mother and her son in Los Realejos to normalize the lives of ostomized people, with Crohn’s disease and incontinence.
The association was established a year ago, but the battle between Oliver García Grillo and his mother, Salu, began when he was little and at the age of 8 he was diagnosed with crohn’s disease, a chronic disease that causes inflammation in the digestive tract.
After years of hospital admissions, relapses and dozens of surgeries, Oliver decided to undergo an ostomy, an operation that changed his life and made him see the other reality of his illness: the limitations he has to face on a daily basis. for a disability that remains invisible and unknown to many people.
In the quarantine he had more time to think, he began to look at photos and decided to publish them so that people could see his evolution, how thin he was at certain times because he could not gain weight and his current state. Thus, in September 2020, he decided to open a Facebook account and take the first step to make his illness visible and which was followed by Aceiio, whose objective is to make his reality known and that of other people in the same situation, his daily struggle and leave to be invisible to society.
Oliver is the vice president and his mother, the president, although they clarify that they are part of a team whose initial plans were hindered by the COVID-19 pandemic but even so, they have not stopped. In just one year they have managed to be 25 members, have 12 active volunteers and have a presence in all events of a sporting, cultural or social nature.
“Because it is our first year, we have made a lot of progress; bathrooms created for ostomized people, a network of supportive businesses and we have appeared in schools and institutes to raise awareness from the youngest ages. And I hope that these twelve months will only be a small grain of sand of everything that remains to be done”, says Oliver.
His first success was getting the toilets on El Socorro beach, in Los Realejos, which he considers ‘his’ beach because he has been there since he was little. That was Aceiio’s first request and his first achievement: in September of last year the first adapted toilet with adequate sanitary furniture was inaugurated, which was later joined by the Basilio Labrador Sports complex, the Alcampo La Villa shopping center, they already have the commitment to have others on the beach at Punta Brava and at the bus station in Puerto de la Cruz and insist that they be installed in the two hospitals on the island.
When asked how many toilets for people with an ostomy are needed in a new building, the association answers: “The same as for any person.”
Also in Los Realejos, a network of solidarity businesses has been created that offer the establishment’s bathrooms to all the people who need them without them being forced to go to a bar and sometimes having to pay for a drink. They have a sticker that identifies them ‘You can enter’. “That is why we do not want to have to give explanations to be able to access, but rather that people who need it can do so with an identification card that reads ‘I want to enter’ and that is issued by an institution or the Canary Islands Health Service. This is one of their great battles, but they do not give up and want to expand the network to more municipalities.
“It is difficult because there are invisible disabilities. I have the bag and I can show it, but there are people who have incontinence, for example, and that cannot be proven”, she maintains.
Oliver has gone from having difficulty talking about his illness to giving talks in schools and institutes to start raising awareness from the base, which is the children.
The young vice president has shared his experience in what was his old school, Nazaret, but also in the CEIP Pérez Zamora, and Agustín Espinosa, from his municipality and another from Santiago del Teide. The commitment to go give a talk to a nursing assistant cycle and to other training cycles is already marked on the agenda.
“Children stay very much with the message of helping others and what looks different, if it is normalized and given visibility, can be better for those who have an ostomy. I saw myself with this problem when I was young, I thought I was the only one who had a bag and who suffered from the disease, it shocks a lot, but if you share it and talk about it, you can live it better, ”says Oliver.
He assures that sometimes he has been surprised by the reaction of the little ones when he begins to tell his story. She tries to get them to participate, to make it a talk between both parties in which they keep the message of empathy and helping others, because that’s how it was and is her case. Thanks to his colleagues and his friends, it was easier for him to deal with crohn’s disease.
It also reaffirms the idea that “union is strength” and conveys to them that this is why the association arose, because it realized that there were other realities like theirs, with needs, that if they joined they would achieve more things and they were going to support among the relatives.
He feels comfortable because he talks about his experience, “which luckily or unfortunately has been very complete in terms of social relations, not because he is an expert in irritable bowel disease.”
Aceiio brings visibility to all areas. This weekend they are present at ‘Erase: the city of stories and words’, with a stand in Plaza de La Concepción, in Realejo Bajo, making themselves known with their merchandising products, and at the Orvecame Norte 2022 Rally They also sign up for trail running, trail running, there’s nowhere they can’t go. “By being in many places with the products that we sell in the association, people are interested in knowing who we are,” he adds.
In December of last year he had the courage to tell his case and transfer Aceiio’s demands to the Parliament of the Canary Islands. “We need spaces of security and respect,” said Oliver in his appearance before the Health Commission of the Parliament of the Canary Islands, in which all political groups are represented.
Aceiio has expanded to Gran Canaria because its intention is that the scope of work be autonomous and since March it belongs to FAPOE, the Federation of Associations of Ostomized Patients of Spain.
However, Oliver assures that there is still a lot of work to be done. In his case, studying is still an obstacle and that is why he insists on having an extraordinary exam session when he cannot attend because he is admitted, a request that is also supported by other students who only ask is to have the same opportunities as the rest.
He believes that the final evaluation is not everything, despite the fact that when he does not attend class because he is admitted, they only tell him the final evaluation. A reality that changed with COVID and that “angers him” a bit, and that is why he transferred his anger to social networks so that they know his reality. “They enter you and intervene. Final evaluation, you do not justify the faults and 0 helps. With COVID; They justify the absence, offer you online classes and send you teaching resources on the subject. Equality I do not see, ”he wrote.
However, given the stress of not being able to comply, this year he has put his university studies on hold because he needs to be calm and focus on his health.
He always gives the example of his facebook photo in which he is on a walk. The people who know him look at the landscape, at the sea, but for the people who have not received the ostomy message, “they stop at the belly and the bag, no matter how beautiful the landscape is ”. That is what Aceiio wants to change and assures that after a year of visibility and struggle, little by little he is achieving it.