A “very precarious” life
María Jesús, Irene’s mother
My name is María Jesús Magdaleno, I am 52 years old and I live in a town in Segovia, Cuéllar, in the middle of the Castilian plateau, in the so-called empty Spain. Fortunately, for a few years now, a highway has connected us to the provincial capital and the capital of the Autonomous Community.
I am writing here without being the protagonist, because the one who truly is, is called Irene González, she is 21 years old and she is my daughter, and the reason for her protagonism in this micro-story is her intellectual disability, she has Down Syndrome. Irene was born weighing 620 grams, which meant spending her first four months of life in an incubator at a reference hospital for great preemies in the capital of Spain, almost 200 km from home. Thanks to the magnificent professionals and their experience, my daughter is alive, despite the fact that, a few days later, after suspecting her trisomy, they told us that we could donate her body to science, as it was very likely that she would not survive, and if she did, it would be a very precarious life.
When my daughter turned 18, I gave her several gifts. Instead of going to court to incapacitate her, I went to the notary to make a power of attorney, in case it was necessary for me to represent her, without her rights as a citizen being diminished. I also gave her her digital certificate so that she could sign all administrative documents from that moment on, as I lost parental authority. And, of course, a big surprise party, with all the important people in her life, with music, dancing, and food; everything she loves. Finally, a video of her 18 years (when I finished editing the video, the first person I thought of was the doctor who one night, near the incubator and me in a wheelchair, not yet recovered from the C-section, invited us to donate her body to science).
Looking at the images from the video, of Irene’s 18 years of life: at school, in the park, practically all over Spain and in many European cities, dancing in public, reading poetry in public, swimming, horseback riding, on excursions, at camps, parties, and family celebrations… I thought: how could anyone assume that this could be considered a precarious life? Can anyone determine a person’s future? And the answer is that many people believe they have that power. And parents, in addition to being mothers and fathers, have the mission of dismantling those prejudices. It’s a titanic struggle that begins the day you receive the disability certificate and lasts a lifetime, first in the park, then at school, at work, and it continues in society. And often we are accompanied, but many other times, we are alone, with our anger, struggle, frustration, tears, anguish, pain… but also with our love, support, and belief in our children, and of course, with hope for a better world, one that includes all of us.
Irene has an intellectual disability due to Down Syndrome, a physical disability due to severe scoliosis, hypotonia, flat feet, and short stature, and also a sensory disability due to hyperopia, nystagmus, lack of visual acuity, and hearing loss. Adding it all up, her disability certificate shows a figure very close to 100%, indicating reduced mobility and the need for a third person. For the gurus, she would be someone with a precarious life, but for us, and above all for her, her hearing aid (which allows her to overcome hearing loss), her glasses (which give her better vision, though not perfect), her orthopedic brace for four years, 23 hours a day, and a lot of physical therapy, Pilates, yoga, and swimming, which prevented her from needing surgery and gives her a routine of healthy exercise for the rest of her life, are all part of her normal life. And her education, which allows her to speak, write, manage her finances, have her own judgment, write poetry, be curious about her surroundings, and participate in society, having drinks or traveling like anyone else. But the path was not easy, and even less so living in a rural area.
Early Intervention
In a town of 7,000 inhabitants, there was no early intervention, nor was it expected. Three years after Irene was born and up until today, Cuéllar has this service. It wasn’t easy, and the fight took me two intense years of claims. By the time the results came, my daughter was too old to receive the service. However, since then, many have received early intervention in their town, without having to travel 60 km.
I learned the first lesson. To win the game, it’s not enough to know how to move the pieces, you have to know how to play. The administration is slow and you have to start before the need arises. And I followed this guideline in the rest of the struggles, being very useful.
Schooling
In no school in Cuéllar was the figure of ATE (Educational Technical Assistant) present before Irene was enrolled. In early childhood education, I started the demand, and by the time she entered school, this support was available, along with PT and AL support.
The early childhood and primary stages are the simplest in schooling, but there is always the ghost, like a sword of Damocles, of who we will get at the beginning of each school year, a teacher who sees Irene as a challenge or a burden. Fortunately, in this stage, we only had two bad teachers, most were acceptable, and three excellent.
And where the game truly begins is in secondary school; things got serious there. Many supports outside the classroom, significant curricular adaptations, and it was far from expected that she would graduate.
Following my directive, two years before the end of the stage, I began with the goal of graduation, as Irene had a brilliant academic record, an average of ‘notable’ (good), and most importantly, she enjoyed studying. She was progressing a lot, and she overcame all challenges. Once the compulsory stage was finished, she decided she wanted to continue studying. But, at this point in the game, the fight moved from being played at a regional level to being played at the “Champion. Currently, the request for the ESO (Compulsory Secondary Education) title is on its way to the European Court of Human Rights in Strasbourg, after the Supreme Court of the Spanish State (Supreme Court and Constitutional Court) has dismissed appeals, thus not evaluating the substance of the matter.
With all the existing regulatory framework, it is still questioned whether people with intellectual disabilities deserve recognition for their effort and a key that opens the next door for them, like everyone else. Because that is what that stamped piece of cardboard represents, it is a serious violation of their fundamental right to education and an unequivocal discriminatory attack on the right to be educated in equal conditions, as indicated by Articles 14 and 27 of our Constitution and Article 24 of the International Convention on the Rights of Persons with Disabilities.
Personal assistant
When the Dependency Law (I call it the Autonomy Law, because that’s the part that interests me) was approved in Spain, out of the hundred and some pages I read from beginning to end, I only underlined one thing:personal assistant. I immediately saw that this was what my daughter would need to develop her life project. Being autonomous and having a full life is not knowing how to do everything, nor being able to do everything; it is having the possibility to do it, without barriers and with the necessary support.
Again, my strategy two years before Irene turned 18: I requested an appointment with the Head of Social Services of the Junta de Castilla y León. I introduced myself and began by saying: “In two years, I am going to request this benefit; my daughter will need it to study outside of Cuéllar. I am here to tell you that we have two years to get it started.” It wasn’t easy, but it wasn’t impossible. I managed to find the right person, and by the time Irene came of age, she had this benefit recognized. The law had been in effect for 10 years, and no one until then had rescued it from the drawer of dormant dreams. Even today, there are communities that do not have the service recognized, and thousands of people are prevented from requesting and enjoying it.
When Irene was born, I thought of the institutionalized people I knew with Down Syndrome, and I knew from the first moment that this would not be our path. I live in a small town, but in the digital age, the internet is a window to the world, beyond the boundaries, where things are not as you would like them to be. It offers you the chance to discover models you like better, people who think like you, and projects that align with your approach. Thanks to this, you get motivated and become an activist for my daughter’s rights and for everyone’s. Because individual struggles contribute to the benefits of all: early intervention, school support, personal assistant services were a path that was unpaved when Irene started walking. But we found the educational laws and the United Nations Convention on the Rights of Persons with Disabilities already in place. The sum of everyone makes the result better.
There is still much to be done, which is why not one step back, and long-term vision glasses are my compass and now my daughter’s, because she is very clear about what she wants, and is already capable of defending her right. We have not yet gone through the educational stage, yes the compulsory one, but the vocational preparation stage has just begun. Then will come the stages of working life, independent living. We are taking the steps to make that happen. Because if you know where you want to go, it’s easy to know what steps to take.
Two years later
The Supreme Court also dismissed the appeal for the violation of fundamental rights in denying the degree, despite having passed all Compulsory Secondary Education with an average of Noteworthy. However, Irene has continued her academic training, holds two professional qualification certificates in the administrative field, and has passed three competitive examinations with good grades, but without a position.
In one week, university begins with a specialized degree from the University of Valladolid, in collaboration with ONCE and European Funds. This is already the 6th edition and involves about twenty public universities in the country that are developing it. Just before the pandemic, I met with the department of the Faculty that will develop it at UVA, giving them all the information so that the Dean’s Office would accept the challenge of implementing it at the University of Valladolid, and it has borne fruit.