Defending the right to a dignified and independent life
Raúl Aguirre, artist. Concha Casasnovas, Raúl’s mother.
Overcoming the limits of the medical, educational, and social environment
Concha Casasnovas, mother of Raúl Aguirre
At 3 and a half years old, a high fever from measles caused what they initially thought were eclamptic seizures. Later, and not so long ago, they linked it to the measles virus.
As a result of that and for many years, his condition was very critical, experiencing multiple daily tonic-clonic, tonic, and atonic seizures (that is, every epileptic seizure imaginable) and an absolutely negative medical prognosis, even recommending that we take him to a residential institution, as his condition was going to be vegetative and so that his state would not interfere with the “family harmony.” (You see how little doctors’ audacity has changed!)
Getting a diagnosis was also very complicated for us, and it wasn’t until almost 10 years old that we knew it was Lennox-Gastaut syndrome. Aggressive treatments combined with his pathology limited his learning capacity and academic performance.
He went from his school, El Ágora, one of the very few inclusive schools of that time (the 80s), to a Special Education school after developing an eating disorder, apparently due to difficulties adapting with peers (something that was our decision, guided by the psychiatrist treating him, and he actually progressed a lot). He painted non-stop, basically smudges, although around that time he started drawing something resembling the human figure.
When he was 15, we decided to leave Madrid and move to the countryside. That was the best thing we could have done for Raúl (not so much for his brother, who hated the change): his physical, cognitive, and emotional immaturity took a drastic turn. He attended a Special Education center in Alcalá, and the rest of the time he interacted with nature more and more independently. He went from needing constant physical contact with an adult, due to the risk of serious falls, to moving autonomously and independently through the countryside. Contact with nature, in general, and especially with horses and birds, gave him a special energy. Freedom was like air to him, bringing about a change on all levels, especially emotionally.
The progression was very slow, but unstoppable: she began, already in her twenties, to attend the adult classroom in our town, where she learned to read and write functionally with the support of a wonderful local teacher and a mobile phone, which allowed her greater autonomy. She worked in an occupational center doing farm and gardening tasks and, at the same time, continued drawing and communicating with the world orally with difficulties and a lot of effort, relying on drawing and the phone to take steps towards her independence.
In 2013, at the age of 37, we published the book “La cabeza del rinoceronte” (The Rhinoceros’s Head), which, in addition to collecting part of her pictorial work and her own memories and emotions, included artistic impressions from various people (those who involved us in editing it, related to the art world) and other testimonials from her close circle. It was another milestone in her development towards independence, as it empowered her and connected her with the world of theater and with Una Mirada Diferente at the Centro Dramático Nacional (CDN), which later led to her professionalization with “Cáscaras Vacías” (Empty Shells), a play that for two and a half years kept her, with the support of a personal assistant, in contact with completely independent people, traveling, living, and in some cases, resolving very complicated situations.
And her desire for independence was born, her return to Madrid, and her progressive incorporation into a supported residential space, Las Fuentes, where after a few months she ended up sharing an apartment with two other people and with the support of professionals who, in addition to working on domestic life skills in the housing, supported her in acquiring autonomy in getting around Madrid.
And Covid arrived!
Since March 11, she returned to her family home and spent months where her only connection to the world was her parents, although remotely she maintained contact and activity with the professionals from Aprocor and INTRA with whom she did theater, drawing, painting, and easy-read text validation activities.
But returning home and the change in all routines, especially those related to her autonomy, and living exclusively with her parents (although from June onwards we expanded meetings with her brother, sister-in-law, and nephews) was still very hard for her, and the prospect of returning to Madrid became increasingly bleak (as long as the risk of covid existed, mobility around the city would not be easy for her).
Near our home (which was originally a farm and livestock property, although it is not part of our activity) there are some semi-abandoned single-family houses where, until not many years ago, people who worked on the farm lived. The houses were in a chaotic state, but one day Raúl decided to start cleaning one of them and thought it could be his home. He did the same with a space he adapted from a chicken coop.
We thought it would be a game, something temporary during the first months of isolation, but then we started to think that the matter was serious and there was no other option but to help him clean the house, paint, make repairs, etc., responding to the support he was asking for. Each step he took encouraged and empowered him more, so we sought the support of his Facilitator (a strange word that has been used, at least around here, who is responsible for helping him achieve his life project) from the Aprocor Foundation to manage the possibility of a Personal Assistant (the same wonderful person who supported him in Madrid) and at the same time, with the Occupational Center, support for possible community work.
For now, the housing support issue is working very well; he lives in his house (which he is still fixing up) during the day and eats and sleeps at ours. He takes care of a chicken coop with a dozen hens, but with the occupational center, things are still stalled, as the process with the Community of Madrid, both on their part (Aprocor) and ours, has not yielded results so far; they continue to support him remotely, but Raúl needs more support and the bureaucracy is very slow and sometimes desperate.
He also attends the Camarma Theater School and is waiting for the Adult Classroom to begin. In terms of work, for now, he does cleaning in neighborhood spaces, works on drawing commissions he receives from time to time, sells the occasional book, and applies for theater auditions.
I wanted to briefly review his life because I believe it is a paradigm of how believing in and supporting a person can lead them to achieve whatever they set their mind to. Raúl has overcome all the limits that the medical, educational, and social environment has placed on him.
The bond that allows you to meet other people
Raúl Aguirre, artist (1).
For a long time now, I stopped living with my parents in their house, and I have started living in my new house: “my house”.
I feel good, with joy and happiness. I feel more autonomous in the kitchen, but only in some things.
At night I am afraid of the dark. When something scares me, you have to be brave and face your fears. I have more privacy and can decide if I want to go to bed.
I really like to draw and paint. It makes me feel good because I convey the color according to how I am. I get the color across to people when I put myself in the other person’s shoes.
I like it when I give someone one of my drawings and see how they react.
I have started having a personal assistant 3 days a week and I work on autonomy, shopping, and temporal space. Since I was little, I haven’t been able to dedicate myself to studying more, or go to high school or university, because I have been very ill due to my illness and they haven’t let me.
I also go to theater class 🎭. I love it when the audience arrives, I say something and I see their reaction. I feel there is an energy when you step on stage for the first time, there is a connection with the ground and at the same time you start to float, it’s like your own home, so to speak.
I believe there is a bond, and that bond makes you meet other people.
I’m going to start going to read 📚 in the Adult Classroom. There, different people have the same opportunities. I feel there is no discrimination. I feel respect.
I find it difficult when I don’t have the teacher’s attention at the moment I need it.
I learn.
I love birds 🦅 and painting and photography 📸. I also love cooking 😃, horseback riding 🐴, and making new friends.
Notes
- You can read a report about me in Majorities.