Interview Project “Disabled people speak” by Johan Peters
Mié, 08/04/2015
incluD-ed would like to share an inspiring project by Johan Peters, a 45 year old Dutch freelance journalist living in Antwerp (Belgium). At the age of eight, Johan got a cerebral hemorrhage due to a fall on the back of his head. This caused a disability by which he can’t use his right hand anymore making his mobility more difficult.
In May 2013, Johan Peters started a long lasting journalist project. He intends to visit all the European Member states to interview people with a disability about their life in the country concerned. The main aim of this project is to show people without disabilities how it is to live with a disability in Europe. Which hopefully inspires them to work on a better inclusion of their fellow citizens with a disability, he says.
***
Johan Peters’ Project & Story
I started my European trip ambitiously in 2013. I made a trip of more than five weeks, visiting 13 countries in a row: The Netherlands, Belgium, Germany, the Scandinavian countries, the Baltic countries, Poland, Czech Republic and France. Thanks to sponsoring money and my own savings I was able to finance such a long stay from home. In 2014, I had not that much money, so I only visited Romania. This year, in 2015, thanks to new sponsors, I will travel to Austria, Slovenia and Hungary in May. In all the countries visited and still to visit I normally always stay in the capital.
Inclusion nowhere ideal
During my trip, I try to speak to as many varied people with a disability as possible. I’ve interviewed people with a physical disability, a visual impairment, a hearing impairment. I spoke to a young woman with Asperger syndrome, to a mother of a child with a mental disability. Whether they are young or old, have a good life in itself despite the disability or a more difficult life: one thing they all tell me, and I’m able to see myself, is that in no single European member state full inclusion has been reached yet.
There’s still a lot of work to do before people with a disability can say the circumstances are ideal for a complete integration into society. This goes both for financial matters as for practical matters (think of accessibility, the possibility to have a job, the behavior towards people with a disability). I can tell endless stories about the accessibility of cities, but I will focus here on behavior towards people with autism or a mental disability.
A Danish experience
Maja Kristine Johansson (has Asperger syndrome herself): 'Danish youngsters can be rude to children who are not like them. For instance, they talk very negatively about kids with Down Syndrome. They don't want to be seen with their fellow disabled students. To change this behavior there must be proper education about disabilities.’
At school, Maja was sometimes bullied because of her different behaviour. One teacher always told her to 'look her in the eyes'. Something people with autism find difficult to do. 'I wonder how things would have developed if it had already been discovered in kindergarten that I had Asperger. I assume the bullying would have been less. Teachers should have to be educated about ADHD and Asperger so they can recognize it’.
‘Should the bullying have succeeded, I would have dug a hole in the ground to get in. But, I managed to overcome the bullies. Now I know I'm different from other people, I feel an inner peace. Should it be possible to cure Asperger, I don't think I would wish to be cured. I can try to become more social, but there's no pressure anymore.’
Finding interview partners not always easy
In each country, I try to speak with at least two people out of the target group. Most of the time I succeed in doing this, but in some countries I fail. In Latvia I ended up with no one to interview. In Austria the teller stands at one interested person, less than two months before my departure to Vienna. It really surprises me it’s sometimes that difficult to find people. Organizations for disabled people in the country concerned often don’t even respond to my mail.
When I have found someone, the interview normally goes smoothly. With each interview there are some topics I always want to discuss: the accessibility in the country/city (public transport/buildings), the financial situation of people with a disability, the chance to find a job with a disability. Depending on whom I am speaking to, more personal matters come up as well. This tactics has already resulted in many varied interviews which can all be found on my website www.disabledpeoplespeak.be
An interview I especially like to mention is the one I had with two employees of Abilis Foundation in Helsinki. The foundation helps people with a disability in the third world countries. What makes it special is that all the employees have a disability themselves. Jaana Lina explains how the foundation works: 'Our main philosophy is that disability is a human rights issue. The UN Convention on the Rights of Persons with Disabilities (UNCRPD) is the basis for Abilis’ work. Disability is not a medical problem. People with a disability have human rights as well. We support projects that educate human rights in developing countries.
'Many countries and governments have limited resources to meet the needs of Persons With a Disability (PWDs) and to implement disability policy and services. They appreciate the Abilis support to local disability groups/DPOs. Abilis is a civil organization.'
'The attitude of society towards people with a disability in the countries we work is often negative. Parents of a child with a disability are called "being cursed”. This negative attitude and discrimination make life even harder than it already is for the disabled. There are no services or aid devices. There's no possibility for education or teachers don't want a child with a disability in their class. They are regarded as a burden to society. It's a big challenge to change that attitude. Abilis wants to make impact. People must get to see the capacity of people with a disability.'
Lifetime project
Like I said in the beginning, I hope to achieve that non-disabled people start to reflect about how it is to live with a disability in Europe - both in the richest countries and in the poorest countries. My site is being visited by some 30,000 visitors a year, so I can easily say the subject in itself interests a lot of people.
It’s a pity I have not been and will not be able to finish the project in a definite period of time. It’s not only because of a lack of money, but also my personal disability forms an obstacle in this. After I will have finished my trip in May, another 11 countries still will be on my list to visit. I hope to have finished my travelling by 2018 the latest.
And then? The interviews remain online (www.disabledpeoplespeak.be). My memories won’t fade either. Maybe, I should do more with them towards national and European politicians. I’ve thought about that right from the start. The problem is that every politician will tell you that he or she knows inclusion of people with a disability into society is an important subject which he/she supports. With words. When it comes to arrange the financial means they all see big problems. That’s why I hope many people without disabilities, the John and Karen in the street, discover my site and start to read the interviews. After all, if every person without disabilities thinks more about inclusion, and act to it, this will be of much more practical value. Seen this way, my European trip will remain a lifetime project even when it’s finished.
To end, I give you the thought of visually impaired Karina Wüttke from Berlin. She thinks all Europeans with a disability should unite together.
‘I think people with a disability should have to co-operate more to get things done. The next generation of disabled people and the one that comes after it must have better opportunities. Why don't we unite as Europeans with a disability and contact the media or organize for instance a conference?’