Journey towards Inclusion : Inclusion

Written by: Snežana Lazarević, associate of multiple organizations working in advocacy of the rights of persons with disabilities and children with development disabilities

There were many newspaper articles and TV reports in August about what happened at the Belgrade airport, when a boy with autism was prohibited from boarding his flight due to being distressed. I would not analyse the statements made by the airline, the Civil Aviation Directorate, or the parents, because the issue is not about who was right, whether charges would be filed, whether the parents are to blame – the issue is that a crying boy did not get to go to the seaside and that, I firmly believe, this situation could have been resolved in another manner.

As a mother of a young man with autism, I thought a lot about this event, recalling similar situations we found ourselves in. I’d like to say, right off the bat, children and persons with disabilities, and if you would have it, particularly children and persons with autism, are constantly facing a lack of understanding, fear, obstacles, not just in transport, but whenever they leave their house – in health centres, shops, cinemas, hospitals, or schools. One reason is their unusual behaviour, and often the fact that they can become agitated. Why and how this occurs is difficult to describe in a short text, and it is even more difficult to provide a “recipe” on how the problem can be solved, so perhaps it is best if I quote my son Stefan, who is also publishing articles on the Social Inclusion and Poverty Reduction Unit blog:

“Rules are very important for me, and I need them in order to function more easily. It is important for me to know what is expected of me – how I should behave in different places, under certain circumstances, when will things happen, when will they end, what will come afterwards. I would like to know all this so that I could prepare in advance. When something unexpected happens, I do not know how to behave, and I find this very difficult to handle. Therefore, people should keep this in mind, but it would seem that many people do not understand this.

When I was little, I always liked to travel the same road… When dad would change the route, I got upset and cried. My parents tried to announce a change of route in advance, for example, they would tell me that before going to the Institute we would drop by at grandpa’s, or a shop, so I found it easier to bear. However, they could not always announce such changes, because they could not foresee that there would be a traffic jam, a car crash, or road works along the route. I thought about ways to make things easier for myself, and I decided to keep my eyes shut in the car if we were not going the way I expected. I also found it important to return the way we went, so my parents respected this. When I started using a mobile phone with a camera, I came up with another way to make things easier for myself – I recorded the road I like to take, so in case of changes I would watch the video instead…

When I started using public transportation on my own, my parents explained to me how I should behave, where to wait for the bus, what to do if there is a jam somewhere, where and when I should cross the street, not to stand in the door so that people could get in and out, etc. However, no one ever told me that I should get up for older people, pregnant women and those with little children. Once I was coming home from my training, I was a bit tired, and so I sat down in the bus. Suddenly, and older man addressed me, raising his voice, asking me to get up and telling me I was a disgrace to youth. I felt really uncomfortable, because I did not know I was supposed to get up for older people. I was upset for a few days because of this situation, but I learned the rule, and ever since I have been asking older people whether I should let them have my place. Recently, a lady commended me for being well mannered and thanked me for getting up for her.” (Blog post: “Why Rules and Schedules Are Important for Me, and Why Change is Hard”)

The events described show that it is very important to prepare the child for what lies ahead. If we take the example of an airport, for a child with autism it is not enough to just tell them that, for example, they will have to wait in line to turn their luggage in, and that after that they will board the plane. They need to hear as precisely as possible how long they will wait – if they can tell the time, they can be told at what time the waiting in line will end (this is, you’ll admit, hard to know in advance). Another way can be to tell a child how many people there are in line before him or her – we used such strategies in waiting rooms at the doctor’s. This helped in situations when nothing unforeseen happened, for example, someone cutting in front of the line, when it would be very difficult to calm him down. That is why we always took books and newspapers to waiting rooms, or I would wait in line and my husband would walk outside the building with Stefan, and when I would see that our turn is coming up, I would call them to come back. All of this requires a lot of energy and engagement by the parents, and it is not always possible, either – what can one do when both parents cannot be present?

Parents can prepare the child to an extent, but what should be done by staff providing a service? I do not mean only respecting regulations and laws, I mean the professionalism that involves providing the opportunity for everyone to use, in this case, the services of the airline. Thus, a professional should think about how to reach the goal, and not just to eliminate anyone who does not fit the mould, thus calming the situation. I believe that in the case of the boy from the beginning of this text, it was more a case of fear based on prejudice, than bad intentions. However, there is no justification for such treatment, because simple solutions were not tried first – offer the child a candy he loves, take him to a quiet room and give him the opportunity to calm down, check him into the plane out of line, comfort him. Energy should be invested into solving a problem, not in seeking an excuse for why one acted in a certain way, or quoting articles of the law and rulebooks. A child with autism has the same right to cry as any other, and there is no reason to call it aggressive because of that, nor can its crying endanger anyone’s safety.

(The text originally published as the introduction to the 47^th Newsletter on Social Inclusion and Poverty Reduction.)