As the end of 2014 draws near, it is time for New Year’s resolutions. One of ours for the coming year is to help make the world a fairer and more egalitarian place. To this end, this Christmas we have decided to collaborate with Asindown, a Spanish association fighting for the integration of people with Down Syndrome.
Chairwoman María del Mar Galcerán met up with us to explain the work they carry out and how we might help improve this society.
First of all, can you tell us what Down’s syndrome is and how it affects people? The impression is that there are still many stereotypes on this issue that need to be debunked …
Down’s syndrome is a genetic alteration that occurs in chromosome pair 21, where instead of having two chromosomes there is an extra one, i.e. 3. This is why people with Down’s syndrome (DS) have 47 chromosomes in each cell instead of 46. This alteration may involve associated diseases, such as coronary or respiratory problems and so on, but today many of these problems, for example heart disease, are resolved at a very early age and the rest can be superbly controlled with a specific health program for people with DS. In addition to medical problems, DS also entails an intellectual disability, which varies from one person to another, but nowadays it has been clearly demonstrated that if they are provided with the necessary resources from an early age and work is done on the whole cognitive aspect, people suffering this genetic alteration can lead a normal life, working and being independent, without this meaning that this is so in all cases. It is important to note that Down’s syndrome is not a disease. A person with DS may be perfectly healthy. As I was saying, it is a genetic alteration which may or may not entail associated pathologies.
How does Asindown help people with Down’s syndrome and their families?
Asindown helps people with DS and their families from the cradle to the grave. I’ll explain: when the person is born we provide the family with support and advice (the first visit program). Then, we run the early stimulation program up to 4 years of age and after that Asindown supports the family and child throughout their schooling. After completion of the compulsory education stage, Asindown offers courses to continue their pre-employment and job training. There are also programs for autonomy, leisure and independent living, as well as initiatives for older people that help them age well, accompanied at all times by support and counselling for families. Asindown also engages in constant advocacy work with the authorities to improve the resources we need and ensure our rights, while promoting social awareness campaigns for social inclusion, so that people with DS can lead a normal life.
You have been Chair of Asindown for some months now and you have also become one of the first people with Down syndrome to hold a responsible position in an organization of this type. What does this mean to you?
It constitutes a very important challenge for me, as the post comes with a lot of responsibility. I feel proud because I’m representing the group of people in which I include myself and although this responsibility sometimes threatens to overwhelm me, I know I’m not alone. I have the backup of a great team that supports and believes in me. I apply the effort and will to learn, mostly because I don’t want to disappoint those people who have trusted me, and all my colleagues, people with DS.
This year you’re due for congratulations, celebrating the association’s 25th anniversary. Tell us about the challenges you see for the future.
The goals we set ourselves for the future are to continue working and achieving aims such as being able to lead more normal lives, with the same opportunities as any other citizen to enjoy life in society, which should and must accept the differences. We are all different from each other, but we all have the same rights.
Is there still social rejection, or are the barriers gradually being broken down?
Little by little, albeit very slowly, barriers are being eliminated, especially mental prejudices, which are much more difficult to break down. Nevertheless, there is still a degree of social rejection and on some occasions disadvantaged people like us have to endure very hard or humiliating situations. There is a lot of ignorance, lack of knowledge, and this means that people often don’t know how to relate to us. Because there are still some people who judge us without even knowing us. Because when they actually get to know us they realise that we aren’t all that different after all, that there are more abilities and disabilities. You can really only get to know the person when you deal with them; you can’t make judgements without knowing them first. We need to cast aside the stereotypes that have done so much harm.
Achieving full integration of people with Down’s syndrome is an issue that concerns everyone… In what way can we collaborate?
By getting to know us, dealing with us, really finding out what our problems are and opening up your hearts to diversity, because it enriches us and benefits everyone, leading us towards a fairer and more humane society.
This Christmas, at EDICOM we are collecting messages of hope for a more just and equal world. What would yours be?
If you help me, if you give me your hand, to go along the same path together, I’ll be sure to get there and I can assure you that I will surprise you and make a good travelling companion.
If you would also like to share with us your message of hope for 2015, click here. A better world is possible.