Education for any child is a constitutional right, and that right applies to every person, including those with special educational needs (SEN). The same as universal accessibility, a right endorsed by Law 20,422, which ensures all people with disabilities full social inclusion and equal opportunities. But unfortunately the reality is different. This is demonstrated by the cases of these three families, from different communes and regions of the country, who have waged long battles against discrimination so that their children, wheelchair users, can exercise that basic right.
"The laws protect us, but the people do not". Karol Gajardo Martínez (34) is a mother of five children. Two of them are wheelchair users due to a genetic disease, of which both she and her husband are healthy carriers. "It's about spinal muscular atrophy type 2. With the birth of my first child I knew that all my children would have a 25% chance of having the disease, but I always wanted a big family and I was not going to stop because of that, because I feel that somehow we all have something, only that theirs is more visible, because it is physical; but it's a difficult battle. " When talking about battle, Karol not only refers to the one that as a family they have to give for the illness itself; the therapies, the medicines, the operations and a host of other aspects, but to the silent and standardized discrimination for which they have passed at the moment of wanting to school their children users of wheelchairs. "When we were looking to enroll Tomy (his eldest son) I went to ten schools in Talca, where we lived until a week ago, and nine closed my door, because there were no conditions or infrastructure or because I was not willing to integrate it It is a tremendous struggle. Every time we go to a school we have to go almost asking for forgiveness and begging for help, to put your hand in your heart, and even then most of us say no, even those who claim to be inclusive, private or municipal, because for them it is the easiest way out. One tries to explain that it is a right, but they can still close doors because if one does not demand, nobody controls, and many hide in the 'there are no quotas' ".
In fact, in matters of accessibility, the supervision is in charge of the Works Directorate of each municipality. "This is stipulated in the law, but in practice the municipalities do not have the resources to put personnel in charge of that inspection, so today it works through demands. Any person, with or without a disability, can denounce the breaches before the Local Police Court, and from there they send to the Works Department to do an investigation; but like everything in Chile, it has to start from a demand ", explains the accessibility architect Ivonne Mella Vidal.
When Tomas, Karol's son, had to go to pre-kindergarten, there was no municipal school that accepted him, and she and her husband had no alternative but to enroll him in a special school where he had classmates with cognitive problems. The same teachers told him that "el Tomy" was lost because he was super intelligent and mature for his age. "We managed, after a lot of time, to enroll him in a private school, but we had to send videos, letters, medical reports, we even looked for support in the Telethon. Obviously the school was not adapted for people with reduced mobility. They told us that they were going to put ramps, but we had to take care of the rest of their needs. My husband had to build a bench in the house, and I had to leave it in the morning, return at noon to take him to the bathroom, then take him to lunch at the house, and then take him back. I was pregnant, and nobody helped me because for school it was enough the 'help' to accept and put the ramps, which were also poorly made, because they were made of wood and broke all the time. We were there for a year, but we ended up exhausted and started a pilgrimage to find another school again. "
Photographs: Jaime Palma
Although the recent March 4 expired the three-year term to make the adaptations of universal accessibility that Law No. 20,422 and Supreme Decree 50 established in order to ensure the right to equal opportunities for people with disabilities and obtain full social inclusion, eliminating any type of discrimination based on disability, reality seems to demonstrate the opposite. Lucia Carmela Araos (36) knows it. Seven years ago he had the twins Julieta and Florencia, who due to a fetal-fetal transfusion - a severe complication that can affect twin pregnancies with only placenta - were born prematurely for 27 weeks. That caused Florencia a cerebral palsy that triggered a spastic diplegia that affects the mobility of the legs. "When the garden search process began, I was confronted for the first time with discrimination, and I began to experience disability. I always say that I am also a wheelchair user, Florence occupies it, but in the end, when a child uses a wheelchair, the whole family inevitably acquires that disability, "he says. Like Karol, he does not remember how many gardens the door touched. There he realized that almost no place had the adaptations for children with reduced mobility. "There is also no teacher training. We know that it is not easy, because deep down all the pathologies are different, and they have special needs, but to avoid that 'problem' they prefer to block the entrance by pure fear and ignorance, "he says. But in spite of everything, that stage of the garden is the one that remembers with greater affection, because finally it found a very small one, that although it did not have any adaptation it abrió the doors to him and did all the possible one so that Florence was integrated; they installed ramps, adapted the bathrooms, even painted the facade again with the figure of a round of children holding hands, including a little girl in a wheelchair. "It has been the most beautiful experience in all these years," recalls Lucia.
But that happiness did not last long. When the twins had to go into basic first, he says, it was to hit with reality. "Nobody was telling me anymore, I was living it in the first person. We live in Vitacura, and we visited many schools in the eastern sector. I obviously needed two places, and most, first, they told me they had them. I was happy, I was postulating Juliet and everything was fine, but when I explained the case of Florence, the problems started, there were some giant laps looking for ridiculous excuses, "says Lucia. He sought help from the education coordinators of Las Condes and Vitacura, but in both cases he was told that the municipal schools with PIE (School Integration Program) were already with all the seats taken. "The Ministry of Education requires municipal schools to have seven places for children with special educational needs (SEN) per course, of which two are for permanent SEN and five transitory. In the case of Florence, which requires permanent assistance, they told me that they were all taken, but the truth is that one does not know either, because there are never quotas, never. And if you think about how many children in a wheelchair you see in a school, or with another of the permanent SEN, it's practically zero. It is not a transparent postulation. There is also no support, because one as a mother does not know what organisms to turn to, one just goes out like a runaway horse knocking on doors because he is desperate. " Finally came the data of a very small school, the San Juan de Las Condes. They told her that there was no problem, that the two little girls could enter, because in that course, first basic, there was only one student, who went to classes with the second grade because they did not have a teacher, and they proposed that they would look for a teacher for the teacher. course, but she had to cover the costs of all the infrastructure that they obviously did not have. "At this point one accepts everything, because he no longer feels that you are fighting for the rights of your children, but that you are asking for a favor, an alms," says Lucia. He had to ask for a loan to install mobile ramps and create a parking lot for people with disabilities. She had to finance the expenses of all school furniture in Florence, in addition to paying an assistant to take her to the bathroom. He even got talks to train teachers. "You become condescending with the system, because as long as your children have a place to study, where to make friends, one is willing to do everything." Six months Florence was in that school, until Lucia decided to remove it because everything was a problem and was no longer viable. "When I went to say that I was withdrawing my daughter, the director told me: 'Well, you know that we did an act of charity with you and Florencia'; I really could not believe what I was hearing. " With grief and anger, the search began again. March came this year and the twins were still without school. He spoke again with the head of education in the commune of Vitacura and finally managed to open a PIE quota for Florence. On March 14 the twins entered the school Amanda Labarca. "Many doors were closed, but finally a large one was opened. They have had very good disposition, from the director to the teaching team. There is still a lack of accessibility, but there is a will to move forward, "says Lucia.
From the Municipality of Vitacura, Mayor Raul Torrealba says that approximately seven years ago they began to advance in the line of inclusion. "We have that commitment, to understand that we are all different, and that there are people with disabilities that we can not ignore, which is what historically as a country we have done. Ojo, I do not say that's why we are better or that we do everything right, we can still be making thousands of mistakes, but a few years ago we are already committed to this commitment, which I will not deny, it is difficult, because every child with a disability has a different educational need that may require something we did not have. "
Photographs: Jaime Palma
Change of consciousness
In 2010, Zidan Linares (20) went with his father and his three-year-old sister walking through a fair in Puente Alto. Without anyone having time to react, a speeding car passed in front of them, hitting Zidan, who came out on the ground and fell to the ground with a head. He was eleven years old, and he remembers nothing of that day nor of that month when he was in a coma. When he woke up, he was told that he had suffered neuronal damage that would make it impossible to walk for life. "It was very difficult to face the world in a wheelchair. At first I could not move anything, and my mom had to take me everywhere. Today I can walk alone, but I realized that there are many obstacles, many places that I could not reach because there was no accessibility, "he says. But that was not the worst. From first basic Zidan attended a school in Puente Alto, but after the accident they did not want to receive it. "And that the school had ramps and forklifts in case I had to go up another floor, but when my mom went to talk, they said they could not accept me because it was dangerous. Over time, when I started to recover mobility, my mom went again. I had already lost a year of studies while I was recovering, and again they said no. Even after I went to school with her, so that the director could see me, and see my progress, but they insisted that they could not receive me. My colleagues even campaigned to get accepted, but the director did not want to, "says Zidan. Finally he had to go to the hospital school of Sótero del Río, which is ready for patients. He spent two years there, he did sixth and seventh grade, and for the third time his mother went to ask the school to integrate him. "I was going to the Telethon, and there they suggested to my mother that I change my school because if I did not, I would never be integrated into society. So he left again, and finally he succeeded. I returned in the eighth grade, and I appreciate it, because I just had a head teacher who played a lot for me. From the first day she told me that she was happy that I was on her course, that for her it was a tremendous opportunity to improve everything. That teacher and my classmates were key at that stage, because if I had played a teacher who had seen me as a problem I would not have wanted to continue studying, "says Zidan.
María José Escudero, executive director and co-founder of Fundación Ronda, responsible for transforming companies and organizations of all kinds into inclusive from their DNA, sees this problem as a true "black hole". "What we see is a lack of tremendous knowledge. Many times the fear generated by the unknown causes doors to close. That is why it is fundamental to raise awareness. See how the State and civil society can come together to develop a plan on issues of universal accessibility and discrimination in schools. It can not be that nowadays so many families are going to enroll their children with a disability asking for it as a favor, and finally becoming accomplices of the system, because as long as their children have schooling they are even willing to put their hands in their pockets to invest in the accessibility that by law corresponds to them. And this is something generalized at the country level, that is why it is fundamental to get to the root, and make a massive awareness, "he says.
"Universal accessibility is considered as a right for all people, and that allows participation, autonomy and independent living. When we speak of accessible public spaces, we do not refer to the 'state', but to any space for public use, and here the buildings, pharmacies, malls, clinics, schools ... all have to comply with that accessibility ", Explains Ivonne Mella Vidal, an expert architect in universal accessibility. In the case of a school, municipal or private, Ivonne says that the building, to be accessible to all, must have, among other things, ramp if necessary, handrails, contrasts of the stands and footprint, ie, pavements with guide texture and warning. "Once inside, that the information is in Braille, that there is a person receiving or who knows sign language. And then we have to make the place where the students are going to be completely accessible: the bathrooms, the routes of displacement, doors that allow the entry of wheelchairs, and if there are more levels, there is an elevator. The same in furniture, banks, casino inns, everything has to be accessible. And think about details, such as the height of the switches or the handles of the sinks, which do not imply large expenses, but an inclusive conscience, and for that it is key to integrate people with disabilities, to know what their real needs are, because many times the law says that, for example, a ramp can be up to 9 m; but in practice, the person who has to walk all day in a wheelchair does not give the physical capacity and prefers a 3 m with a rest. Then, the indications not only have to give the regulations, but also the people who will be the users of that space or building. If an accessible construction works for a person in a wheelchair, which is the disability with the most architectural barriers, it works for everyone. That's why my call is to internalize the culture of thinking about the other, "says Ivonne.
Access for all
According to the latest study conducted by the Senadis (National Disability Service), in 2015, 16.7% of the population has some disability. Of that percentage, 4% have a physical disability; 4%, sensory; 2%, mental, and 3%, multiple. There are almost three million Chileans who would eventually require universal accessibility urgently, but there would be several other groups of the population, such as the elderly, people with obesity, pregnant women and children, who would also benefit from it, and for the entire population would be comfortable, according to the study.