Why can't we listen to incest openly

Disabilities of Incest Children: Everything Stays in the Family

According to German law, cousins ​​are allowed to marry. For their children, this is where the health problems begin. Visiting a family in Herne.

60 percent of deaths and serious illnesses in children could be prevented "if inbreeding were stopped". Image: yemaija / photocase.com

Sinem Gündogdu * breathes, she twitches sometimes, she makes sounds, every now and then she smiles or a tear flows down her soft cheek. Sinem lives a life in a crooked body and is isolated in her mind. The girl from Herne cannot get up, speak, or take an active part in life. Her legs and arms are bent, her black short hair frames her delicate face.

She is 15 years old, looks 8 and her eyes are blurry. That she is alive is a miracle because the doctors only gave her a few years. Her sister Özlem died three years ago - when she was only 12. Sinem and Özlem were both seriously physically and mentally handicapped, and their older sister Azize, 17, attends a school for people with learning disabilities.

How can it be that all three children have a handicap? Seyran and her husband Askin are cousin and there are numerous scientific studies that show that incest children of parents, even if they do not have an illness themselves, are significantly more likely to suffer from serious congenital diseases than children of unrelated parents.

For example, a British study came to the conclusion that 60 percent of deaths and serious illnesses in children could be prevented "if inbreeding was stopped". It can therefore be assumed that the suffering of the children of Seyran and her husband Askin is also related to the relationship between the two.

In Germany it is difficult to find statistics or reliable figures on relatives marriages. One of the few who has collected data on this phenomenon is the Berlin prenatal diagnostician Rolf Becker. In his practice, he has examined a total of 636 unborn children from kinship marriages over the past 20 years, about half of which came from a cousin-cousin relationship.

Epilepsy, hearing loss, muscle wasting

In this group, a total of 50 unborn babies - around 8 percent - were affected by a severe disability, some of which led to the death of the fetus in the womb. In at least 20 of these unborn babies, it can be assumed that their illness was causally related to the relatives of their parents.

Children from marriages between relatives are more likely to suffer from hereditary diseases, epilepsy, hearing loss or muscle wasting. The risk of developing a genetic metabolic disorder is greater and life expectancy is lower. Julia Hennermann, metabolic medicine specialist and pediatrician at the Berlin Charité, calls for early clarification - ideally in schools.

About 15 percent of the metabolic patients she treats are from relatives. Of course, Germans also marry each other, but the majority are migrants. Whether the couples didn't know about the risks beforehand. "For most people, genetics is something very abstract," says Hennermann.

Irritated looks

Mother Seyran walks with her two children every day through the ugly Bahnhofstrasse in Herne. She pushes Sinem's wheelchair, Azize walks listlessly next to her. Quite a few look when the three of them walk along, irritated, sometimes pitying or evasive.

Azize also perceives these looks. "I used to have a huge problem going public with my siblings. I didn't know how to deal with the reactions of strangers." At some point she decided to simply ignore her environment. It is their strategy to get along with life. She finds it difficult to read and write, and even more difficult to understand. She does not formulate sentences. Sometimes Azize seems a little distant, as if she lives on a completely different planet.

It is not uncommon for relatives to be married to one another. In Western Europe, marriage within a family was still quite common in the 19th century. To this day, marriage between third-degree relatives - that is, between cousin and cousin - is not prohibited in Germany, but it is seldom. Relationship marriages are most common in the Middle East, in countries where Islam is practiced. This is the result of a study by the Australian Center for Comparative Genomics.

More than half of the marriages there are within one family. Why give the daughter to a stranger when she can stay with the family? Relationships are not taboo, the consequences that may arise from them are taboo. A geneticist, who does not want to be named, says cynically: "Oman is a paradise for us human geneticists. They all get married there, there are the craziest diseases".

Seyran's life began 40 years ago in a village in Turkey. Above all, she brings tolerance towards the existence into which she is born. She doesn't finish school, she doesn't learn anything, she gets married at the age of 20 and follows her husband Askin to Germany, they end up in Herne. Over the years they have three daughters and have always lived on social benefits.

To rebel against his father, Seyran never thought of that. The father, the male relatives, your own husband - they are in charge. This is how it always was, this is how it always will be, this is how she teaches her daughter Azize, who should marry as young as possible, and that's how it will probably happen. Because the western idea of ​​the free choice of partner is ostracized in their circles.

The family moves in a milieu in which neighbors meet in the morning to watch Turkish compassionate television, where few work, often live from the state, people with many children and poor prospects. In a word: parallel society.

A blaring television can be heard through the entire three-room apartment. In the rooms there is oriental kitsch next to plastic figures that can be obtained free of charge from the local pharmacy. The things with which Sinem has to be taken care of are scattered everywhere. Your medication, blankets, a large medicine ball - everything is a bit chaotic. This is probably a normal state of affairs when you have to look after someone, someone else always needs help and your husband doesn't care about anything.

She is there for her sick child 24 hours a day, 7 days a week, 365 days a year. Every day Azize washes and feeds her, heaving the twisted body into the wheelchair. An arduous day-to-day life, with a lot of bureaucracy in the way, with constant applications and the obligation to provide evidence for the health insurance company. Of course, sometimes she does notice the limits of her strength, but what should she do? Seyran refuses to have her daughter looked after in a home. "A mother doesn't give up her child," she says.

When their first daughter was born, everything was fine at first. It was only after a few months that Seyran realized that something was wrong with her baby, but it wasn't until much later that it became clear that Azize was learning disabled. With the second pregnancy, they hoped that it would go well this time - but it did not work, and the third daughter is also severely disabled. Of course it is terrible that her children are not healthy. But the family's reactions were worse, says Seyran.

What is Kani Bozuk?

It is not uncommon in patriarchal Muslim communities that it is said that the woman is to blame for the deformity. You have "bad blood" - "kani bozuk". Nobody said anything like that to Seyran, but her husband's male relatives in particular made her feel guilty, accusing her behind her back of smoking and drinking during pregnancy.

Yasemin Yadigaroglu, a social scientist from Duisburg, has been campaigning against family relationships for years. In 2005 she started a postcard campaign with slogans such as "I want children, but not from my cousin" and "I want to marry, but not my cousin". She distributed these to schools and mosques, where she also gave lectures on the health risks of a kinship marriage.

But she is not welcome everywhere, the congregation of the Merkez Mosque in Duisburg accuses her of "pollution of the nest" and denies her access to the club rooms. She received threats, mostly from religious fundamentalists. But she also heard from colleagues of German origin that she was stigmatizing migrants. It is a politically incorrect topic that the public fears. Alleged racism can be invoked here too quickly. Because Yadigaroglu's project applications for her campaigns were rejected, she now wants to work with gynecologists.

Despite all the efforts, sociology knows that the dangerous tradition is unlikely to change anytime soon. It is not for nothing that a common saying in Turkey is called "Good girls marry relatives, bad girls are given to strangers".

* Name of the family changed by the editor