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    Excluded in a Number of Ways
    The Difficulty of Being a Person of Migrant Origin with a Disability in Germany

    ‘It’s normal to be different,’ says the UN Convention on the Rights of Persons with Disabilities; and in theory, at least, Germany agrees. However, research into the day-to-day experiences of people of migrant origin with disabilities show that when it comes to turning this good intention into reality, Germany still has a long way to go.

    According to the migration pedagogue Ursula Boos-Nünning, the take-up of almost all social assistance that is available to people with disabilities in Germany is below average among families with a migrant background. However, as interviews with families of migrant origin who are raising a child with disabilities show, this has nothing to do with ‘cultural differences’. In a research project conducted at the University of Bremen, parents report that it is above all their migration situation and experiences of discrimination that determine whether and how they can avail themselves of services: families often come up against language barriers, their insecure residence status prevents participation, or their request for measures that will not exclude their children fall on deaf ears. Ayşe Kolat and her daughter have experienced all of this. They came to Germany when Rana, who had early infantile autism, was four years of age. ‘We had already started therapy in Turkey. However, we came here seeking political asylum. We spent two-and-a-half years in a hostel for asylum seekers. During this time there was no therapy and we could do very little for Rana.’ The strain on families with uncertain residency status has been proven to be immense: in many cases, the fact that they have to live in overcrowded hostels, have minimal health insurance cover that only covers the most acute conditions, and are not permitted to work leads to psychological problems. If ‘nothing can be done’ for the child, families can break down under the strain.

    The fight for information

    Ivana Ilic, a social worker with the charity Kölner Rom e.V., tells of a refugee family with two disabled children who have been waiting for places at school for several months. ‘The mother can’t even go shopping for food because she can’t make it to the supermarket with her three children. The living conditions in the hostel are just wretched. And on top of everything, not even the educational authority is making an effort to get them places at school and to support their development.’

    Some families only get a definitive diagnosis many years after the birth of their child. However, contrary to the assumption that parents don’t want to accept that their child has a disability, many parents find waiting for a diagnosis a huge strain. They’re worried that they are wasting valuable time – time during which their child could have been receiving support. The reason for this is quite straightforward: in Germany, until there is a diagnosis, there is no support. Important support measures cannot be taken, and it is more difficult to address the specific needs of the child.

    ‘When I was in Iran, I was well informed,’ says Parissa Jalili. ‘I knew the system; I knew what had to be done.’ Both Jalili’s children have a disability. The first child received care and support in Iran. When the second child arrived, the family was forced to leave the country. According to Jalili, when she arrived in Germany, she was powerless. To this day (her son is now twelve years of age), his disability has not been diagnosed.

    These families are locked in a daily struggle to obtain information. But they are coming up against a system in which authorities and institutions only provide information when it is specifically requested, which means that people have to know that they can claim specific services and know where to submit their applications.

    Many parents encounter discrimination. They are spoken to like children; they are sometimes accused of preferring to care for the children on their own (‘because that’s the way it is in their countries of origin’); they are supposed to sign forms that they do not understand. As a consequence of all this, they avoid contact with the bodies that provide assistance and advice.

    That’s how it was for the Yildirim family. Eight-year-old Fatih Yildirim used to go to a special school where the focus was on learning. Although his father is no great fan of the special school system, he saw that his son felt at home there and was developing well. He hoped that Fatih would soon learn how to read and write: because Mr Yildirim is worried about his son’s future. What will become of the boy if something happens to his parents? Mr Yildirim does shift work; there is not much money left to save at the end of the month. He relied on the school’s support and hoped that it could help Fatih become more independent. However, after a year, the teachers decided that Fatih should switch to another school. When the new school year began, he had to move to a special school where the focus was on ‘intellectual development’. Mr Yildirim felt that this was a step backwards. But the school got its way even though both Fatih and his parents were opposed to the move. Mr Yildirim tried to intervene, but failed, because he wasn’t allowed to bring an interpreter along to the meetings. Pressure was put on him to sign minutes of the meeting, although he could not understand them. He was not told anything about his rights at the meeting.

    How to deal with disability

    Many families with a migrant background are critical of educational facilities that exclude certain children, such as special-needs kindergartens. Fariba Mostafawy shares this view: ‘Of course, the best solution is when all children are together.’ However, it is more difficult for children with a migrant background to visit a regular kindergarten or an integrative school. Parents report that their children are either not offered places at these schools or are refused such places on the grounds that their child is not suited to an integrative school. For families with an uncertain residency status, it is even more difficult to get a place at preschool for their children, even though families in a precarious situation are in particular need of support. Ms Jalili also spent several years in a refugee centre, where living in such close quarters with others was a psychological strain on both the family and the child. ‘The situation was completely unacceptable. It was very difficult indeed. Some of the other families were even involved in a stabbing incident. That was caused by all the stress. Initially, we couldn’t bring our child to preschool because there was no room.’ Eventually, she gave up on the idea that her son would go to an integrative school. At the age of four he got a place in a special school. ‘He was afraid of children; he’d had no previous contact with children, and he started to scream.’ Had the child been able to attend preschool, both he and his family would have been able to participate more in society, which would have been a welcome relief from their difficult life in the refugee centre.

    Of those families with a poor command of the German language, those who spent their child’s early years in their country of origin know more about their child’s disability. Parents who were already living in Germany when their child was born know much less about their child’s disability.

    It is often assumed that families of migrant origin ignore offers of disability assistance because their frame of reference is the inadequate structures in their countries of origin. This assumption is not, however, confirmed by the families interviewed for this research project.

    ‘I’m only going to make myself unpopular’

    The case of Canan Mutlu shows that families of migrant origin naturally do want support that can help their children be independent. Mutlu’s sons initially showed no consideration for their little brother’s early infantile autism. ‘In the beginning, they had some difficulties because they wanted to treat him like a normal boy. So I said to them, ‘Okay, on the one hand that’s good; on the other hand, you have to remember that he has a disability and you have to live with that. He’s not going to get better in this respect; he will always be autistic. But we can make sure that he’s more independent.’‘ She is happy that her son is making good progress at the special school and that he has a chance of being able to switch to an integrative comprehensive school.

    Regardless of their educational background, these parents disprove the frequently-voiced theory that parents with a migrant background are insufficiently willing to support their children by co-operating with the school. The pedagogue Fariba Mostafawy felt that her son’s kindergarten didn’t have a specific concept of how to provide sufficient support for her son, so she took matters into her own hands and enrolled him in a sports club. He took part in athletics, swimming, and water-skiing. ‘I want to be able to say to him, “Look at all the things you can do!”’

    But some parents react in a more restrained manner if they don’t agree with the pedagogical work in the school or kindergarten. ‘Well, I’m not going to go in there and ask, “Why is my child is learning so little here?” I’ll only make myself unpopular,’ says Fariba Mostafawy, who fears that such an intervention on her part could have a negative effect on the children. This is why many parents go on the defensive when they make contact with educational institutes, instead of contributing their knowledge and expertise about their child. They try to compensate for the deficiencies that they see in the German education system by taking action themselves, and don’t dare to demand assistance from any institutions. However, these interviews show that when the parents don’t get basic support – care allowance, allowance for those with visual impairments, a disabled person’s ID – then even the support measures initiated by the parents themselves don’t bear much fruit, because they have to invest too much time and effort in earning a living.

    In their staff professional development courses, the German institutions responsible for people with disabilities focus heavily on such things as the ‘evil eye’ and popular beliefs held by people in Islamic countries, and in so doing impose a cultural interpretation on the difficulties of integrating these people. Meanwhile, they completely overlook the structural barriers that make it so difficult for people of migrant origin with disabilities and their families to participate in society.

    Names have been changed.

    For more detailed information on the research project, please see the publication ‘Behinderung und Migration – eine intersektionale Analyse im Kontext inklusiver Frühpädagogik’ (Disability and Migration: An Intersectional Analysis in the Context of Inclusive Early Pedagogy’
    This article was first published in On Diversity, the educational magazine of the AWO [Workers’ Welfare Association] Mittelrhein e.V.

    Donja Amirpur writes her PhD thesis and is a researcher into migration at the University of Bremen.

    Copyright: Goethe-Institut e. V., Fikrun wa Fann
    June 2014

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