Carla Gracia: "Separating is a way to reconcile"

BarcelonaIn Perfectly imperfect (Universo), writer and screenwriter Carla Gracia constructs a fictional narrative to address very real issues: life with a child with autism spectrum disorder (ASD), the lack of shared responsibility in parenting, and the complexity of family relationships. A theatrical adaptation is already in preparation. And this September, she will publish the children's book. The Adventures of Capybara and His Friends.

Where does the need to fictionalize your motherhood come from?

— The day I went to the pediatrician with my son's diagnosis—who has, among other things, an ASD—she told me: "He'll need two things. First, money, because public mental health services aren't sufficient. And second, don't separate, because 95% of couples who have children with a disorder or disability separate." If children normally take precedence over a partner, when there's a diagnosis, everything becomes even more complicated. And well, I separated. I felt I had to choose. The fact that we separated is also a way of reconciling. It's very hard to say it like that, but it's a way of making the other person take care of the 50%. There are a few days a week when I can sleep and work. As simple as that. And, therefore, be financially independent.

In the novel, you paint a good portrait of the mental burden women face. Does this become worse in the case of a diagnosis? How does it impact a couple's relationship?

— Most women who have children with disabilities or disorders request leave or reduced hours, and they are the ones who primarily take care of the children. This doesn't mean that men don't do it. And it's not just the mental burden; there are cases in which the child can't attend the full school day. If, if they're lucky, they go to school from 9 a.m. to 12 p.m., then you have to take care of them and you can't work; it's impossible. And a good part of your work hours must be spent seeing psychologists or psychiatrists or dealing with paperwork related to dependency or disability issues. We women do all of this. And no one covers it.

What did the diagnosis entail?

— At first, you don't understand anything. You don't understand why your child doesn't do the same things as other children. There's a tendency to say that all children are different. Yes, there are different and very different ones. You see a neat line of children, and your child is running around the playground because they can't hold back and they bite, hit, or express themselves differently. And it's when you stop postponing reality that the shock comes. You don't know what you should do, where you should go, who can help you. You don't know if you're exaggerating. I remember talking to my partner and saying, "I can't take it anymore, I need help." Going to pick him up from school was a suffering because the teachers were always scolding us. We went to the park and everything was complicated. And when you have the diagnosis, you have a dichotomy. On the one hand, you start to suffer about everything: for when they reach adolescence, for when you're no longer there... But, on the other hand, you're calmer because you can put a name to it, also in the eyes of those around you, who put a lot of pressure on you and tell you things like, "You don't set limits."

In an interview you said you were tired of apologizing for your son's behavior.

— In the early years, it was all about apologizing and saying thank you when you were invited to parties, as if we were a problem. Now, it's not just a "thank you for having us." But you spend a lot of time alone, because we're rooted in the idea that we should include all children everywhere, but sometimes they don't feel like going to parties because they struggle with the noise, the emotions, or the other children. And we don't go unless they're really excited about it, and we know that the environment won't raise a fuss if they say or do certain things. So that he doesn't feel bad either. He's the first one to tell me, "Mom, I want to go somewhere where the kids are like me." Because otherwise, he'd say, "I'm the worst kid in the world," and that's not inclusion either. We try to protect him from a society that isn't ready yet, and also from the shouting and overstimulation.

You highlight the imperfection in the book's title. In the novel, the protagonist, Ruth, devotes a few pages to explaining what she's learned from her son every day. What do you learn?

— I've learned to take myself into account, to be well, to preserve my time, and to set more boundaries. What Gael has allowed me is not to tiptoe through my own life. Thanks to him, I've freed myself. I always tried to be the good girl, to do everything well, to be at the top of my class, and with Gael, that's impossible. He allows me to be completely myself, even if I'm inadequate. And this also works well for our children, because we don't allow them to be imperfect either. And on a practical level, I can't do a full day's work. All I can do is write; that's what I want and also what I need. You can be angry with life, or you can adapt to the circumstances. It doesn't allow me to have a conventional career, but it does allow me to live a more free life.

Your child has gone to mainstream school and special education school.

— He attended a mainstream public school, and at age 6, after being mistreated and having a psychotic episode, we had to find another school. It was mid-year, and there were charter schools that told us not to send him there because they couldn't accommodate him, when they only had 18 children and none with special educational needs (SEN). Ultimately, all children with difficulties end up in public school in an already overburdened system that will become increasingly unequal. Inclusive schools should be for everyone: charter and non-chartered. Now he spends three days at the special education school and two days at the mainstream school. We're doing a mixed option, and in our case, it's ideal.

Is the education system prepared to address this diversity?

There's a lot of goodwill, and we should be grateful for it, because many people fought to ensure these children weren't left out. But inclusion doesn't mean homogenization. It doesn't mean having all students in the same classroom doing the same thing. We must go a step further. There are students who could be in mainstream schools—fantastic! We provide resources and support to teachers, because some are desperate, but we also provide support to the students. One day, at Gael's school, they explained to me that he got very nervous and started picking at the walls, and the other children started crying. No one accompanied the other children so they could understand what was happening. We need resources to support children with special educational needs, but also to support other children so they understand this diversity, because otherwise, it's exclusion. And we must also understand that there are many children who won't find stability and well-being in a place with a lot of noise and stimuli. Not all of them should go to mainstream school. If in ten years we've gone from 15,000 to 35,000 students with special educational needs, and from a ratio of four students per teacher to ten students per teacher and a half, this means reducing resources. Inclusion means children being in the classroom, but also ensuring they can participate and grow. If they're simply there, it's not inclusion.