I used to rebel, they would take me out of class
Joaquim Llisorgas Santos, student
I am Joaquim Llisorgas Santos and I suffer from a rare disease called Joubert Syndrome, a congenital malformation of the brainstem and an agenesis or hypoplasia of the cerebellar vermis that can cause respiratory problems, nystagmus, hypotonia, ataxia, and delayed motor development. The prevalence of the disease is estimated at around 1 in 100,000 people. I am among that 1%, but, fortunately, I have not developed all the disorders within the complexity of the disease. That is why I consider myself privileged, as I am less affected than other people who suffer from this syndrome.
Perhaps you are wondering why I am explaining this to you, nothing more and nothing less than so that you can see how I have had to fight, how my mother has had to face numerous obstacles so that I could pursue my studies and to make you participants of the hurdles we have encountered during my education due to having this syndrome.
I started nursery school at 10 months old, because although my mother tried to enroll me in various private and public nurseries beforehand, she was unsuccessful. They told her they couldn’t take a child like me. Finally, I was accepted into a school run by the Vilassar de Mar City Council.
But, what was my mother’s surprise when she was told that she had to pay for a support teacher so that I could attend this school? It was a great financial effort for my mother to have to cover that teacher’s salary, as I also needed other therapists and treatments outside of school. At that time, the school only covered the Social Security payments for that teacher.
When I finished nursery school, I was sent to an Educational Guidance and Psychological Counseling Team (EAP) for an assessment, as I still couldn’t walk very steadily due to my musculature. The EAP decided I would stay another year in nursery school, which meant my mother had to keep paying for school for another year.
At 4 years old, I entered the aforementioned school. At first, it seemed like everything would go better there, but I had some problems with teachers who didn’t know how to handle my situation. Fortunately, we adapted and overcame the obstacles that arose over time.
My biggest concern continued to be the reports presented by the EAP and the way they treated my mother and me. They were terrible reports: “I don’t know how to assess this child… Well, I’ll just get rid of him.” One less problem for them.
When I finished primary school and had to start secondary school (ESO), I went through a sea of doubts and problems again to continue my studies. The EAP requested a new assessment, and they gave me an exam that lasted a full day, from morning to afternoon. In July, they finished my assessment, and to my surprise, they informed us that I had not been proposed for enrollment in a school with a Support Unit for Special Education (USEE). Since they saw that I had more knowledge and skills than expected, they considered that I could access any mainstream school, and not one with a USEE, as they had previously told us. Of course, they told us that we could not go to the schools’ open days, and I found myself in the middle of July, without a school and without a place. That’s when my mother and I started to scramble against time. We went to many schools, but without much luck. They put all sorts of obstacles in our way, citing the difficulty I would have in integrating as one of them. They said I couldn’t attend classes normally.
We spoke with the Territorial Services of Mataró and discussed with the EAP to get a place in a school. At the end of July, they offered me a school in Mataró.
In that school, first and second year of Compulsory Secondary Education (ESO) went relatively well. But, from third and fourth year onwards, the problems started. Even the teachers ended up bullying me. As I rebelled against what they were doing to me, they would take me out of class so I wouldn’t bother them. For me, it was a humiliation. In fourth year of ESO, they moved me to a USEE (Special Educational Support Unit) and told me I wasn’t there to learn, but to pass the time. They managed to bore me so much that I ended up with depression, losing 8 kg.
Once I finished ESO, and with the subjects passed, they didn’t give me the diploma. They never told my mother that I wouldn’t get the diploma. From when I started nursery school until I finished ESO, it was a constant struggle with the educational centers. And now I am taking legal action to claim my rights and obtain my diploma.
I would like to be an actor and I am working hard to prepare myself. In fact, I have already filmed a movie and I belong to a theater group. On a personal level, I sign up for theater workshops and talks. I am a proactive person in this field, but since I don’t have the diploma (and it’s been 6 years now), I cannot continue my studies in acting schools. My wings have been clipped and I cannot continue my training. Without ESO, I can’t access anything.
I have the ability and I can do it.
I want to highlight the poor work done by the EAP. They always said that I couldn’t, that I wasn’t capable. It has been my biggest burden all this time, and their assessment has been incorrect. Furthermore, they even told my mother that she was hysterical and crazy, all for trying to exercise my rights as a person, as a student, as a human being. They told her to give up, that there was nothing to be done. But both she and I have continued our fight.
Currently, I am a 100% independent young man, full of skills and attitudes, and eager to move forward. I am capable of achieving anything I set my mind to.