Some 200,000 people who were mentally ill or disabled were killed in Germany during the Nazi era. The cynical name for the extermination program was "euthanasia," which means "beautiful death" in ancient Greek. This horrific past has shaped the way Germany treats the terminally ill and the disabled. Germany's laws on assisted suicide are restrictive, and the country has stricter rules on pre-implantation genetic diagnosis, a form of embryo profiling, than most other European countries.
In 2006, the United Nations General Assembly adopted the Convention on the Rights of Persons with Disabilities, which Germany ratified in 2009. It calls for a so-called inclusive education system for all children, which means that children with disabilities and behavioral disorders should be allowed to attend mainstream schools. The German city-state of Bremen adopted the inclusion requirement in 2009, and other German states are in the process of implementing it.
Now a debate has unfolded on the pros and cons of inclusion. Proponents say that being different has to become normal. But opponents believe that inclusion comes at the expense of special-needs schools, that teachers are overwhelmed, that better students are short-changed, and that disabled children feel excluded in mainstream classes.
It is a debate in which some are berated as idealists and others as ideologues. But, ultimately, the real issue is how to define the moral standards of coexistence.
Berlin contemporary historian Götz Aly, 65, has a 34-year-old disabled daughter named Karline. In a SPIEGEL interview, he talks about the joys and hardships of everyday life with a disabled child. Aly has spent 32 years studying the issue of euthanasia. His book, "Die Belasteten" ("The Burdened"), was recently published by the S. Fischer publishing house.
SPIEGEL: Mr. Aly, you have studied the murders of the disabled and mentally ill in the Nazi era, or what was then referred to as "euthanasia." Didn't the issue strike a little too close to home for you?
Aly: I know, of course, that my daughter would have been one of the candidates for murder at the time. But Karline's illness 34 years ago was precisely the reason I approached the subject in the first place. Perhaps it was also a way for me to come to terms with it. That's what brought me to study the Nazis. It doesn't bother me when issues affect me personally. On the contrary, it bothers me that many Germans who write about the Nazi period behave as if they have no personal points of reference. I sometimes amuse myself by asking older colleagues: "Now what exactly did your father do in World War II?"
SPIEGEL: Your book about euthanasia is dedicated to Karline, and you also write a few sentences about her. Nevertheless, your daughter is hardly mentioned in reviews and interviews. Is there a reluctance there?
Aly: It's an academic book, and it's discussed under academic criteria. German historians cultivate so-called objectivity. They persuade themselves that they can switch off the subjective and therefore the unsettling. But there is one German history professor who regularly asks me how Karline is doing, and that's Hans Mommsen (a leading expert on Nazi Germany and the Holocaust). That sets him apart from the others.
SPIEGEL: How does the reluctance to talk about personal matters affect academic research?
Aly: I am both on the edge of the academic community and in a somewhat tense relationship with it -- a relationship from which I derive energy, inspiration and questions. A large part of this community is unthinkingly self-involved, producing reams of sterile writing -- often consuming unbelievable amounts of public funds -- and serving as an instruction manual for how to chase away readers and ignore historical insights. Much of the research on the Nazi era makes a science out of distancing oneself from it or conjuring its demons. The conceit is that people were monsters then -- as if they were completely different from people today.
SPIEGEL: Where are there commonalities?
Aly: The subtitle of my new book is: "A History of Society." I don't just look at the 500 murderers and 200,000 euthanasia victims. Instead, I try to shed light on what was going on around them. For instance, how did family members and neighbors behave? When you take this approach, you encounter reactions that are universally human. The chronically ill and the disabled can become a burden for families. No one is unfamiliar with this experience.
SPIEGEL: Hence the title of your book: "The Burdened." You demonstrate that killings on such a massive scale would not have been possible without the tacit consent of family members.
Aly: I wouldn't call it consent. The organizers of the euthanasia murders systematically asked how often a patient was visited, and by whom. If they had the impression that a family was not very close-knit, the sick person was taken away far more quickly than someone who received regular visits. After the murder, the relatives received an official death certificate with a fabricated cause of death. Most people resigned themselves to this fictitious truth, accepting the chance they were given by the government not to have to know the real cause of death. Later on, this same social phenomenon -- in which crimes were committed in semi-obscurity and a certain amount of looking the other way was required -- is what helped facilitate the Holocaust. The murderers who began the euthanasia program in 1939 were surprised at how little resistance they encountered. It had to do with the shame many family members felt.
SPIEGEL: A sense of shame that still exists today.
Aly: One in eight Germans is directly related to someone who became a victim of these murders. And if you include relatives by marriage, this would apply to almost everyone. But it was not discussed in most families. The murder victims have been forgotten.
SPIEGEL: Relatives can search the archives.
Aly: The institutions that maintain the files on the victims today usually don't publicize the names, even though there are no privacy concerns involved. I asked the president of the federal archive and the federal data protection commissioner why. Both answered: "Please have consideration for the relatives who are still alive." In the case of the Jews, we would never suppress names. But with the so-called crazy people, we're suddenly told that we want to protect their present-day relatives. Why? From what?
SPIEGEL: It's the relatives' fear that perhaps they too have something in them that isn't quite normal.
Aly: That's right. When the first memorials were created 20 years ago and relatives began sending in their first letters, their main concern was: Do we have a genetic disorder in the family?
SPIEGEL: In your book, you quote a father who, in the Nazi period, expected the director of an institution to relieve him of responsibility for his child. This extreme coldness seems disconcerting to us today.
Aly: The extreme nature of it does, but the underlying feeling of being burdened doesn't. My father had dementia for many years before he was put in a nursing home. We knew it wasn't ideal, but there was no other option. And here's another example: When a group of roommates and I parted ways 35 years ago, one of us ended up in a mental hospital. The rest of us still get together today, but we don't talk about that person. We don't even know if he's still alive. I mean, the mentally ill aren't exactly easy. When a child becomes mentally ill, there can be a lot of finger-pointing in families.
'There Was No Resistance from the Left'
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.