“Everyone can get on a bus, watch TV, go to school, phone their family or write a letter to a friend.”
But is this true? Is this realistic?
Over the last two weeks a group of young people have been brought together for the European Union sponsored Euro-Med “Sports for All” project held in Cairo . People with different disabilities came from Jordan , Slovenia , Spain and Turkey, to join young Egyptians in looking for ways to include all people, whatever their disability, in sport, learning and living. Leaving their family and friends at home, they also left the habits and expectations that molded them. By pushing their limits in a new environment, taking their own decisions and learning from occasional mistakes, they have strengthened their characters and developed personal standards.
This has been no regular holiday; all have been challenged directly by new situations; having to work together, with insufficient language, we have learnt to find in ourselves, immediately, ways of overcoming the internal hurdles, the fears and “can’t do’s”. There have been problems, of course. Problems, like giving birth, are not only painful but – when handled well – allow progress to another stage, from the safe ‘known’ to the unknown. We have grown much faster and learnt much more effectively than on any course. Two weeks of practical experience have destroyed many of the prejudices we came with.
Expectations arise as an age-old self-defense mechanism which helps us decide whether a situation, such as ‘crossing the road’, is likely to be safe. Expectations are based on generalizations from what is known. We can judge something familiar but are less sure about the unfamiliar; when we don’t know what is similar or different, we are likely to make prediction mistakes. This Euro-Med project has helped participants to overcome many of their fears of ‘the foreign’. People who 10 days ago were unpredictable strangers are now our good friends that we hope to see again soon; we have got so used to each other that we look through the differences and see our similarities: friends share similar hobbies, jokes, interests and energy.
In societies where the disabled are too often left out, marginal and not valued, ‘normal’ people rarely question their assumptions about normality. The modern world is designed for the stereotype ‘normal’ person. Are others abnormal? There are so many different types of people! Someone 2.10m tall cannot sit in a regular plane seat; if you weigh 150kg the average high street store will have few clothes to offer you.
The UN estimates that, even in developed countries, 12% of the population are disabled. However, when very few of these are active in everyday life, disability is too often seen as not being an important issue; “Why bother making changes for so few?” What is too easily forgotten is that everyone can become disabled, for instance in an accident. The disabled sometimes call those who are not disabled “ TAB ”, which means Temporarily Able Bodied. This refers to the fact that they have not yet had to learn to live in a world designed to exclude them – either physically or in terms of systems that assume full abilities – and face frequent labeling, rejection and failure.
In the 1970s in Italy it was decided to close all special schools to integrate all their pupils into mainstream education so that the next generation of Italians would not grow up without understanding the richness of difference. Without sufficient preparation, this change perhaps did not provide the best education for that generation of disabled children; however, the vast majority of children, parents and teachers were no longer disabled in their behaviour and attitudes, as the disabled were at last included, participating and seen as “normal”.
Why are most people unable to approach a disabled person naturally? Why can’t they look at us? What are they frightened of? What skills or understanding do they need to overcome their fear? Is it fear of failure? Why can’t they believe we CAN do things? When everyone thinks I cannot run, I start to believe them. If one person believes I can, I might try and then I will start to believe in myself and understand that everyone else can be wrong. I have to show them what I CAN do and must not let them discourage me. I must learn to ignore their ignorance.
Our very human emotions, which evolved hundreds of thousands of years ago, are in fact chemical responses to situations, whether pleasurable or threatening. These chemicals, released into the blood stream, produce a number of physiological responses, such as tense shoulders and stomach (ready to fight off an attacker), drowsiness (when bored without stimulation) or dilated pupils (when interested). These hormones are produced by some of the oldest parts of the neural system, too deep and automatic to be controlled. However, we can learn to live with them. By understanding what is going on, we can learn to look for alternatives, to avoid threats, to avoid getting carried away with excess pleasure, and to understand the real value of what is happening around us. Life is short; a Euro-Med project is even shorter: All good things come to an end… We need to learn to see opportunities, and focus on the quality of the present time.
As rational creatures, we are able to learn to go beyond emotions, which can block deeper neural resources, abilities and understanding. But this starts with the first step of living the emotion, and understanding what is happening. Getting too emotional, and allowing our emotions to control our behavior is often inappropriate. For instance, sharing something with disabled people may be emotional for a person who is meeting them for the first time, and isn’t used to doing things differently. But for the person with a disability, all their life is like that; they are used to it and do not live every day filled with emotions. Every day is ‘normal’ for them too. The ‘normal’ person who is getting upset is reacting ‘abnormally’. They must learn to overcome the protective instinct that makes them want to shield the person who, using non-standard methods, is seen as weak.
The physiological effects of the ’emotion’ hormones become apparent in our body language. Through body language we express emotions that are so deeply rooted that body language cannot lie. It is said that “Actions speak louder than words”. In our Euro Med project, with so many different languages, we have learnt to understand each other without words; without a common language we have learnt to speak with our bodies to tell others what we are feeling; we have also learnt to read each other. At times when people were upset, the best friends, those who noticed and came to show support, were those society usually labels as mentally disabled. Because they rely less on words, they are more sensitive to the non-verbal messages – the subtle messages triggered by emotions and shown in posture, tone of voice or expression in the eyes. Be careful, you may not realize what you are saying, but others are receiving your messages and understanding what you don’t know you really mean deep down inside! If your words do not match your body language, you are confusing. And when you are unpredictable, I cannot trust you.
Do not label me; it is too easy to look at what makes me different, what I can’t do. Do not be so sure that you know what I need. Slow down and watch. Stop trying to compensate and make me feel better. We are all different, we are all disabled, and each of us must find our best way. You do not have my answer, so listen and let me find it. Learn to look deeper and see ME, my abilities and my personality. Like you I have hopes and fears, opinions and preferences, skills and knowledge. Give me space, allow me to feel happy and safe, with realistic expectations I will have a try. When I succeed, I will want to try again!
Above all, do not feel sorry for me! When you pity me, you deprive me of my pride. Who are you to judge me?
Claire Ozel, Cairo , July 2004
Middle East Technical University ,
Ankara , Turkey .
For further reading: see www.oliversacks.com