Life has not made it easy for Lorena Jurado (20 years old). One year after she was born, she was diagnosed with spinal muscular atrophy type 2, a degenerative neuromuscular disease that has confined her to a wheelchair ever since. She “she has been on the verge of dying on several occasions. She has had a very bad time,” explains Raquel, her mother. But she has never given up. Last year she finished the higher degree in Professional Training in Marketing and Advertising. Far from settling, she later enrolled in a degree in Advertising and Public Relations at the Autonomous University of Barcelona (UAB). But then the umpteenth obstacle appeared in her life’s journey: the university informed her that it could not afford a caretaker who would give her the permanent support that she needs and that she has always had, even in the higher degree that she she attended Seeing, already into the month of September, that neither the UAB nor its Administration could solve the problem, she chose to cancel her registration and enroll at the UOC, where she is taking her first distance learning course. However, she continues with the same determination: she still wants to do the race in person. For this reason, she intends to contact the UAB again – the university that is closest to her (she lives in Montcada i Reixac) – to be able to take, with the help of the Administration if possible, the second year of the degree. in person.
Due to his pathology, he requires a person by his side constantly. “I need help with everything, even putting my glasses on correctly,” she explains. She has very little strength in all her muscles. His weakness prevents him from even raising his arms. “Sometimes I don’t even have the strength to type.”
The family had two meetings with the university. A first, in April, where the person responsible for the Piune program (the support service for students with specific educational needs at the UAB) was not present and in which “the issue of the nightstand was not discussed much.” The second meeting, which took place months later, was different. In it, the person in charge explained to them the idea that they themselves should hire an external person given the impossibility of the university to assume the cost of that figure.
Lorena receives a payment as she is dependent (she has a recognized 81% disability and degree III – severe – dependency), but this aid amounts to 387 euros per month, so she cannot assume that expense. Beyond this help, only her father’s salary goes into her house (her mother also worked, but had to leave to take care of her). She wonders why she can’t have a candle holder if she has always had one, even during the higher degree she recently completed.
Until now, it has been the Administration (in this case the Department of Education) that has covered the cost of this figure, covering the stages of compulsory and post-compulsory non-university education in Lorraine. But in higher education it is the university that has to take care of this expense, a reality that the UAB does not shy away from although they tell this newspaper that they do not have the resources to face it.
They explain that they have students with specific educational needs who they accompany to class, transfer them to other classrooms and even accompany them to the bathroom or the dining room. “But we do not have a person, who would mean a salary, dedicated 100% to a student,” university sources argue.
They argue that they explained to the family that they could not financially offer that care and that, in any case, they would speak with the Department of Research and Universities to see if there was any way to be able to enjoy some help. “And that’s where we were when she decided to enroll at the UOC: we met at the beginning of September and there was still no solution to her case,” they argue from the UAB.
Sources from the Department of Research and Universities confirm these contacts. They argue that they had scheduled a second meeting with the UAB (“to obtain more information about the case”), although it never took place: “We understand that it was because the student ended up canceling her registration,” they reason.
They explain that in the department they have a program (called Unidiscat) in which they offer aid to universities to serve this type of student and for which they have just published a new call, which has a budget of 400,000 euros (in 2021 The amount amounted to just over 223,000 euros, while in 2022 it exceeded 231,00).
The UAB admits that they receive this aid from the Generalitat (the part that corresponds to them and that cannot exceed a limit), although to serve more than 800 students. Furthermore, they add, the money is not finalist: “That is, it is used for different purposes: audio guides, machines for taking notes in Braille…”. They understand that 80% of the help they receive would go only to the nightstand if they had to pay for it. “We got as far as we got.”
Lorena explains that, for the moment, she is not doing badly at the UOC, although she maintains that doing a degree remotely has nothing to do with taking it in person. “I like leaving home, meeting new people, living the university experience…”. Furthermore, studying at the UOC represents a greater expense for her family. While, due to their disability, they would have paid 80 euros per year at the public university, the UOC costs them 600 euros each semester.
She not only aspires to pursue the degree in person, but also to find a job. “The issue of employment is already difficult for people in general, well imagine it for them,” argues her mother. She is now employed as a civic agent at the Montcada i Reixach City Council, but it is only a six-month job.
He has no preferences when it comes to finding longer-term employment. She settles for something that fits her possibilities: “Administrative assistant, receptionist, teleoperator, community manager…”.
Among the difficulties inherent to this pathology, he affirms that he is better now. A little over five years ago she could barely speak. “It was very bad,” she says. It took a lot of effort just to hold his head. But around that time he entered a clinical trial that began in Vall d’Hebron and now he is “much better.” “The medication has not managed to reverse the effects of the disease, but it has stopped its evolution,” says her mother. The molecule that was tested in the trial is now marketed as a drug.
The positive experience of studying at the UOC has not changed one bit his intentions to study the degree in person. For this reason, he will knock on the door of the UAB again. Let’s see if the stars align the second time.
