Here is part 2 of a two part interview in Speigel Online International
Read Part 1 Here:
SPIEGEL: Many disabled fetuses are aborted. On the other hand, there is an effort to integrate the disabled, and schools are being asked to participate in this effort. In that sense, today's society differs considerably from the way it was in those days.
Aly: That's true. Karline and we, (her) parents, received a lot of help from government agencies, and we were treated very kindly by private individuals and professionals. It's often said that not enough is done, but that's not true. All I can say is: Thank you. In this respect, we live in a fortunate country. As the father of a disabled daughter, I know how important that support is for inner balance. In the Nazi era, the relatives felt the pressure of propaganda. They were seen as being very burdened themselves, most suffered material hardships and, moreover, there was a war going on. I can understand how people could falter under those circumstances.
SPIEGEL: Your daughter, Karline, was born healthy and fell ill a few days thereafter. What happened?
Aly: When she was three days old, she got a streptococcus infection and wouldn't drink. Some 30 percent of pregnant women have streptococcus B, and if it's detected early on and antibiotics are administered, everthing's fine. These tests weren't common in the 1970s. Besides, it was the era of soft births. Karline was born in a private clinic. They called the pediatrician on the phone, but he downplayed the problem, calling it thirst fever. Karline's condition worsened by the hour. She was thriving in the morning, but by the evening she looked gray, pale and wrinkly. It took too long to transfer her to the children's hospital.
SPIEGEL: Was it the doctor's mistake?
Aly: Yes, but, as the parents, we were the ones who wanted the soft birth. Still, this sort of thing will always happen, in one way or another. Disabilities are part of life; it's just that their nature changes. A case like Karline's is rarer today, and 90 percent of unborn babies with Down syndrome are aborted, but premature births cause more problems today, for example. And there are also more elderly people with serious dementia.
SPIEGEL: How did the doctors react in your case?
Aly: The head of the ICU at the university hospital took me aside after three days and said: "If your daughter survives the next night, she'll be severely disabled." I understood it as a coded question, and I remember it as if it were yesterday.
SPIEGEL: You mean as a question as to whether the doctors should make sure that Karline didn't survive the night? What did you say?
Aly: That he should do everything possible to help her survive.
SPIEGEL: Even before Karline's birth, the plan was that she would live with her mother. The mother, Morlind Tumler, has a child from another relationship, and you have three children from your marriage. How did Karline change your life?
Aly: I want to stress that Karline's mother assumed the lion's share (of the work). She took the first year off from work, but then she went back to her job as a teacher at what was an inclusive school for the time. And, of course, Karline gave me the impetus for my work.
SPIEGEL: You seem happy when you talk about Karline, and yet life with a disabled child is exhausting.
Aly: Karline is unable to speak. She's in a wheelchair, she has no control over her movements, her upper body has to be supported and she sometimes has epileptic seizures.
SPIEGEL: She has to be fed, diapered and sometimes carried?
Aly: Yes, but she's small and delicate. She only weighs 20 kilograms (44 lbs.), which is advantageous. I don't believe that life with a severely disabled child is more tedious than life with a child who isn't as limited. I even think that parents can have far more trouble coping with a moderately disabled child. They try for years and organize dozens of treatments before accepting their child for what he or she is.
SPIEGEL: And, in Karline's case, was it clear from the beginning that there would be little improvement?
Aly: After about a year. So it was easier for us to say: Okay, we'll try to make life as easy as possible for the child. It isn't unusual for parents to develop aggression toward a disabled child -- or even to wish death upon them. It's the result of feeling overburdened, abandoned and desperate. Such ambivalent feelings are a heavy burden on our conscience because they are directed against a person who is close to us and is also completely vulnerable. The Nazis' emphasis on health and fitness amplified this quite human ambivalence and set the stage for a policy of murder.
SPIEGEL: Parents hope to see themselves reflected in their children. It's one of the ways they establish a bond. When a child is gifted, parents like to believe that it's because of them. It must be more difficult to see yourself in a disabled child.
Aly: (This type of bonding) definitely works. Karline is very gentle and even-tempered, which she certainly gets from her mother. She's pretty. She laughs and cries, and she loves music, good food and company. She also drinks a beer once in a while. She looks mischievous at times, and then we say that she looks very intelligent.
SPIEGEL: Your daughter went to an alternative kindergarten and then a special school, and today she lives in a supervised group home. How do you feel about the most recent efforts to achieve inclusion, meaning that all schools should be open to all children? Critics say that when disabled children are sent to mainstream schools, they are more likely to feel different from the norm and suffer even more as a result.
Aly: There are children who recognize that they have a special role, and they enjoy it. But there are also many who sense that they can't do what the others can do, and they're happy to be placed in a protected school. It depends on their personalities. That's why it should be a matter of choice.
SPIEGEL: The call for inclusive schooling tends to come from the left-leaning part of society. You too were once a protagonist of the leftist movement, but you have now distanced yourself from some of its causes. You write in your book that the ideology that leads to euthanasia was inspired by the reform movement, which essentially came from the left. What brought you to that realization?
Aly: There was no resistance to the euthanasia murders from the leftist or secular side of society. The notion of a healthy society, of capable people who are able to enjoy life, arose in the liberal, middle-class, leftist and non-religious segments of society. The euthanasia idea came from neither the radical right-wing nor the conservative corner. It was and remains part of the modern age and progressive thought. It's just that nowhere in the world was this way of thinking put into practice quite as radically as in Nazi Germany. Assisted suicide is a very accepted practice in some European societies that are closely oriented toward modernity.
SPIEGEL: Which ones?
Aly: I recently met with a Dutch colleague. She said that she had just been on the phone with her siblings to schedule a date for the assisted suicide of their mother, who has cancer. The son of the Dutch queen has been in a coma since he had a skiing accident, and he is being cared for in England because there are almost no facilities left in the Netherlands that handle such patients.
SPIEGEL: The Netherlands was the world's first country to legalize active assisted suicide.
Aly: That's consistent with the country's history. The Dutch were the first modern bourgeois society in Europe. At an early date, they stressed self-determination, worldly happiness and prosperity.
SPIEGEL: Resistance against the destruction of so-called worthless life came from the church, specifically Clemens August Graf von Galen, who was bishop of (the northern German city of) Münster from 1933 to 1946. Galen was very conservative. This shows that euthanasia can hardly be associated with categories like left and right.
Aly: In the same sermon in which he denounced euthanasia as a serious crime, Count Galen also raged against premarital sex. The motives behind Galen's resistance are foreign to us today, and yet his singular, courageous resistance is worthy of admiration.
SPIEGEL: Most of us want to live autonomous lives and tolerate abortion and assisted suicide under certain circumstances. At the same time, we know that the model of perfection turns us into monsters. The church is losing influence, leaving a void where moral guidelines are concerned. Do we need new ethics?
Aly: Yes, we have to reformulate moral standards. Human beings have to impose limits on themselves when it comes to their actions and desires. There is a beautiful and very radical notion in the bible: Man is made in the image of God, no matter how sick, poor or damaged he is. We should try to transpose this maxim to our secular and constitutional self-image.
SPIEGEL: Mr. Aly, thank you for this interview.
Interview conducted by Susanne Beyer, translated from the German by Christopher Sultan
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