Monday, April 29, 2013

Irish woman loses Supreme Court Appeal that challenged the ban on assisted suicide in Ireland

Peter Saunders

The following article was written by Dr. Peter Saunders, the Campaign Director of the Care Not Killing Alliance and published on his blog.

A 59-year-old Irish woman today lost her Supreme Court challenge to the ban on assisted suicide.

Marie Fleming is a 59 year old former Irish lecturer who has multiple sclerosis (MS) and wanted her partner to be able to help her kill herself without risk of prosecution (See Irish Times and BBC Europe reports).

She had argued the ban on assisted suicide breached her Constitutional rights and discriminated against her as a disabled person.

This morning, however, the Supreme Court’s seven judges concluded that 
“there is no constitutional right to commit suicide or to arrange for the determination of one’s life at a time of one’s choosing”.
Fleming's landmark case in Ireland is very similar to that of Debbie Purdy in Britain, who won a case in 2009 forcing the Director of Public Prosecutions (DPP) to make public the criteria he used in deciding to bring a prosecution for assisting suicide. These criteria were published in February 2010 and have been the subject of some controversy.

What makes the Fleming case particularly interesting is that her partner who wishes to avoid prosecution is none other than Tom Curran, the Coordinator for Exit International Europe (EIE), a pro-euthanasia lobby group (EIE is part of Exit International, which is headed by controversial Australian euthanasia campaigner Philip Nitschke). 

Suicide was decriminalised in Ireland in 1993, but Section 2.2 of the Criminal Law Suicide Act 1993 makes it an offence to ‘aid, abet, counsel or procure’ a suicide. Those convicted under this law still face a custodial sentence of up to 14 years.

The Irish Act is almost identical to the Suicide Act 1961 of England and Wales, with the exception that in the latter the words ‘aid, abet, counsel or procure’ were amended to ‘encourage or assist’ by the Coroners and Justice Act in 2009 in an attempt to make it easier to secure convictions in cases of internet suicide promotion where the guilty party did not personally know the victim.

In her case against Ireland, the Attorney General and Director of Public Prosecutions (DPP), Fleming claimed section 2.2 of the Criminal Law (Suicide) Act, which renders it an offence to aid, abet, counsel or procure the suicide of another, was unconstitutional on grounds that it breached her personal autonomy rights under the Constitution and European Convention on Human Rights (See more here)

Fleming argued that the absolute ban should and must be relaxed to meet her particular circumstances as a terminally ill person in severe pain who is mentally competent to decide when and how she wants to end her life but cannot do so without assistance. She claimed that the law discriminated against her as a disabled person who needed assistance to kill herself.

A three judge High Court ruled earlier that the absolute ban did not disproportionately infringe Ms Fleming's personal rights under the Constitution and was wholly justified in the public interest to protect vulnerable people.

The High Court also ruled that the Director of Public Prosecutions had no power to issue guidelines setting out what factors she would consider in deciding whether to prosecute cases of assisted suicide. However, the court was however ‘sure’ the Director would adopt a humane and sensitive approach to Ms Fleming's plight, Mr Justice Nicholas Kearns said.

Ms Fleming was not appealing against that aspect of the court's decision. Her appeal instead focussed on arguments that the absolute ban on assisted suicide breached her personal autonomy rights under the Constitution and European Convention on Human Rights and that, in her particular circumstances, this ban was not justified on public interest grounds but was disproportionate and discriminatory.

This claim has now failed, with the Supreme Court rejecting 'the submission that there exists a constitutional right for a limited class of persons, which would include the appellant. While it is clear that the appellant is in a most tragic situation, the Court has to find constitutional rights anchored in the Constitution... [and it] has not been the jurisprudence of the Constitution that rights be identified for a limited group of persons.'

Fleming’s case rested on the flawed assumption that, since suicide itself is not illegal, there is thereby a right to suicide. It is on this basis that she claimed that as a seriously disabled person she was being discriminated against for not being able to exercise that right, when able-bodied people can.

Dignity in Dying (the former British Voluntary Euthanasia Society) has used a similar line of argument.

However this is to misunderstand the basis and intention of the law.

When the British Parliament passed the Suicide Act in 1961 it was assured that the decriminalisation of suicide did not indicate any reduction of the seriousness with which either (a) suicide or (b) assisting suicide were viewed.

The Joint Under-Secretary of State for the Home Department, moving the Suicide Bill's Third Reading, said:
'Because we have taken the view, as Parliament and the Government have taken, that the treatment of people who attempt to commit suicide should no longer be through the criminal courts, it in no way lessens, nor should it lessen, the respect for the sanctity of life which we all share. It must not be thought that because we are changing the method of treatment for those unfortunate people, we seek to depreciate the gravity of the action of anyone who tries to commit suicide…..' (Hansard: HC Deb 28 July 1961 vol 645: 1961(a): Cols 822-823)
He went on:
'I should like to state as solemnly as I can….that we wish to give no encouragement whatever to suicide…..I hope that nothing that I have said will give the impression that the act of self-murder, of self-destruction, is regarded at all lightly by the Home Office or the Government.' (Hansard:HC Deb 19 July 1961 vol 644: Cols 1425-1426)
Fleming and others wish to argue that in some cases suicide is not serious and is in fact a morally good course of action. That is a position that needs to be strongly resisted at all costs.

It is one thing to argue that people who attempt suicide should be treated with mercy and compassion by the courts. But it is quite another to argue that committing suicide, taking one’s own life, is a moral good and thereby a right.

That would be a very dangerous precedent indeed, which once established would be used as a legal lever for more and more incremental extension.

Judgment Of the Supreme Court: Fleming v Ireland 

Irish Court: No right to assisted suicide.

The Irish Supreme Court upheld the decision of the lower court that there is no right to assisted suicide in Ireland, and that the principle of equal treatment does not confer a right to assisted suicide.

The assisted suicide case was based on Marie Fleming, a woman with MS who stated that the prohibition on assisted suicide in Ireland denied her equality under the law. Fleming's husband is a leader of the euthanasia lobby group Exit International.

The Fleming decision is very important to Canada because the Fleming case was based on the Carter case in British Columbia.


The Irish Times reported that:
The right to life under the Constitution “does not import a right to die” in this “very tragic case” , the Supreme Court ruled. 
While suicide is no longer a crime here, that does not mean there is a constitutional right to suicide, the Chief Justice, Mrs Justice Susan Denham, said. There is “no explicit right to commit suicide, or to determine the time of one’s own death”, in the Constitution. 
There was, accordingly, no constitutional right which the State, including the courts, must protect and vindicate, either to commit suicide or to arrange for the termination of one’s own life at a time of one’s choosing. 
The principle of equal treatment also does not confer on Ms Fleming, as a disabled person, the right to be assisted in taking her own life, the court ruled.
The chief justice, Susan Denham, said: "The court will dismiss the appeal of the appellant in this very tragic case." 
The court rejected Fleming's argument that the right to die would be limited to a small group of people. 
"It has not generally been the jurisprudence of the Irish constitution that rights can be identified for a limited group of persons in particular circumstances, no matter how tragic and heartrending they may be," the judges concluded. 
The court also found no constitutional right to die by suicide or to arrange for the determination of life at a chosen time.
According to the Times:
Ms Fleming, living in Co Wicklow, had claimed the absolute ban on assisted suicide in Section 2.2 of the Criminal Law Suicide Act 1993, in her particular circumstances as a severely disabled person unable to take her own life unaided, disproportionately infringes her personal autonomy rights under the Constitution and European Convention on Human Rights.
It is expected that Fleming will appeal the decision to the European court.
The Euthanasia Prevention Coalition points out that the Irish Court considered similar evidence to that of the Carter case and made the opposite decision. We hope that the BC Court of Appeal and the Supreme Court of Canada will also decide that Canada's assisted suicide law is not unconstitutional.

Saturday, April 27, 2013

Your right to die impacts everyone's right to live

The following column was printed in the Calgary Herald on April 25, 2013.


Susan Martinuk
By Susan Martinuk, Calgary Herald, April 25, 2013

Another Canadian has travelled to Europe to be put to death on, what she believes, are her own terms. To most of us, those terms are better known as euthanasia or assisted suicide.

Seventy-two-year-old Susan Griffiths of Winnipeg suffered from multiple systems atrophy. She had lobbied for the legalization of assisted suicide in Canada and, last week, just prior to her death, she sent a letter with this request to Parliament. Fortunately, Justice Minister Rob Nicholson has denied the request, yet a friend claims that Griffiths’ lobbying efforts will now be her legacy to this world.

Several months ago, Ruth Goodman, a Vancouver social activist, chose to end her life at the age of 91. Not because she was ill, but because she was tired and her friends were dying. She made an emotional public plea for legalizing the right to die in a posthumous letter sent to the media. She wanted people to have the right to “choose how and when to end their lives.”
Thursday’s Globe and Mail seemed all too eager to focus on these emotional stories, rather than report the unbiased facts of their deaths as one would expect of a newspaper. Perhaps by way of justification, it cited a growing trend in the number of Canadians who want to share their end-of-life stories as part of a grassroots movement to change the laws against assisted suicide. The Globe seems only too happy to oblige in such cases, choosing to glamorize those who take their own lives, rather than balancing its coverage with stories that encourage people to continue to live.

The Globe even reminded Canadians of Sue Rodriquez, the original “suicide story” that clawed at our national emotions, and her poignant plea for assisted suicide: “If I cannot give consent to my own death, then whose body is this? Who owns my life?”

In the article, former MP Svend Robinson, who had lobbied Canadians on behalf of Rodriquez, says Canadians admired her because “she put her life right out there and that’s what grabbed people — the courage she showed.”

So there it is — the classic left-wing argument against almost everything. Not based on facts or statistics, or what has happened in other countries, but on emotional narratives that are loaded with words like compassion, “I feel,” and claims of “my body, “my choice” and the ignorant and naive assumption that this “will only affect me.”


In sharp contrast, the reality is that giving individuals the right to die “on their own terms” has plenty of public implications. First of all, it involves the assistance of another and the assurance that society will not stand in the way. Therefore, it is very much a public, not private, act. By giving doctors the right to help their patients die, the legalization of euthanasia would also influence the kind of medical care that the rest of society receives. We currently have a medical profession that is dedicated to supporting life, and is not compromised by some within it who will happily help you to die. This is societal progress; in the time of Hippocrates, a healer/doctor could just as easily kill you as heal you, depending on the desires of those paying the bill.

A February 2013 survey by the Canadian Medical Association found that just 16 per cent of Canada’s doctors would be willing to perform euthanasia. Ultimately, Canadians have the gall (and the ignorance) to call for the legalization of euthanasia and assisted suicide because we currently have no qualms about trusting our care and our lives to doctors when we go to a hospital or clinic. We have yet to experience living in a nursing home or going to a hospital where a doctor has the additional option of taking the patient’s life. That is why it’s instructive for us to consider what has happened in other nations:


Consider the Netherlands and the decade of euthanasia statistics reported in a 2012 study in The Lancet medical journal. The number of “assisted” deaths there has increased 73 per cent since 2003. About 23 per cent of cases are not reported to a review committee, as legally required. Over the years, physician-assisted suicide has morphed into the less provocative term “alleviation of symptoms,” and, in 41.2 per cent of deaths classified as such, the physician did not discuss the decision with the patient, relatives or another physician.

In Belgium, recent statistics show that 32 per cent of all assisted deaths occur without patient consent, and only 52.8 per cent of assisted deaths are reported.

So does legalizing the so-called right to die provide any assurance that anyone will die “on our own terms?” Not likely.

Instead, if legalized, the individual right to die will have huge implications on my (and everyone else’s) right to live.

Don’t be fooled — euthanasia has nothing to do with “my individual choice” or “my right to die.” It’s a very slippery slope that affects all members of society.

Doctor responds to Dr. Kress's involvement with assisted suicide in Montana

The following letter was published in the online edition of the Ravalli Republic newspaper in Montana. This letter is a response to the article by Dr. Kress describing the three suicide deaths that he assisted.

I am a general medical practitioner with 30 years’ experience. I work in emergency medicine, with nursing home residents and with incarcerated persons. I have two issues with Dr. Eric Kress's (April 7) opinion describing his assistance of three suicides. 

First, since when did assisted suicide become legal? 

Second, I have concerns about the cases he describes.

Kress claims that his patients were not depressed. His description of one of those patients, however, suggests otherwise. Someone who is "often … found weeping and bemoaning the miserable fated that had befallen him" sounds depressed and unrecognized and untreated. And, someone who is "experiencing increasing pain in his chest…" may have needed different medications. There is essentially no pain that cannot be treated, though a secondary effect may be to hasten death. I do not know the medical facts of these cases; I do know that there were other options than committing suicide, whether or not they were explored.

Doctors’ diagnoses can also be wrong. I have seen patients in my own practice live longer than expected. With this situation, patients participating in medical suicides can be throwing away their lives. I have also seen suicidal people get better, and rebuild lives that looked pretty grim. I do not agree that doctors or anyone else should be assisting other people to commit suicide.

Carley C. Robertson, MD,
Havre

Friday, April 26, 2013

Book Review: After The Error: Speaking Out About Patient Safety to Save Lives


Book Review by Adrian Rhodes: 

After The Error: Speaking Out About Patient Safety to Save Lives
By Susan McIver, PhD., and Robin Wyndham.
ECW Press, Toronto, 2013, 254 pages, paperback and e-book, $19.95. 
Dewey reference [362.10971]

After the Error is a book that anyone interested in medical issues or issues around serious illness and medical provision in Canada should read. 

It is a collection of sixteen essays in the first part, and the second part has family and patient resources. 

There is a listing of online resources and further reading in an appendix.

Tim & Barb Farlow
The first essay is by Barbara Farlow whose daughter was born with Trisomy 13, a genetic condition. 

The essay tells of the family’s determination to help Annie live to the best of her life – and the resistance that the family got from the medical establishment.

One doctor repeatedly asked if the parents wanted ‘death with dignity’. The child died in suspicious circumstances and the family found out that a DNR was quietly placed on Annie without discussion.

The Lisa Shore case and its aftermath is detailed in this book in deep analysis. 

This book outlines how families are left to pick up the pieces on their own, but its overall tone is one of hope and a desire to improve service, not punish. The book shows how we can guard ourselves by careful documentation and provides a section in the second part on how to document what happened in the case of an error.

It is Canadian-focused, and this makes it particularly useful as a relevant resource, for learning how to cope with our medical system.

This book is not for everyone: there were parts I found hard to read, but if you want more resources for your family or yourself, this book is a good addition to your resource base.

Since we are having dialogues about medical provision and ‘euthanasia’ and ‘assisted suicide’, this book provides a real-world catalogue of why we should not legalize medically provided death.

I urge anyone with an interest in this subject to read this book.

Purchase After the Error from the Euthanasia Prevention Coalition for a donation of $20.

Susan Griffiths, Assisted Suicide and Switzerland.

Susan Griffiths
By Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

The story of Susan Griffiths assisted suicide death at the Dignitas clinic in Switzerland has significant emotional appeal. 

If assisted suicide is so caring and compassionate, then why do people with disabilities and other caring and compassionate people oppose the legalization of assisted suicide?

Some media outlets have went from reporting the story of Susan Griffiths death to advocating for the legalization of assisted suicide. Within the media hype over assisted suicide, a few voices were heard opposing the legalization of assisted suicide.

Amy Hasbrouck, the leader of Toujours Vivant-Not Dead Yet stated in her article titled, Suicide Celebration instead of Suicide Prevention
The reasons she (Griffiths) gives for wanting to kill herself are related to disability, needing help with personal care and other daily activities, having to use adaptive equipment, losing independence. The subtext is that, as a person with a disability, she believes she will be less worthy, less dignified, less than fully human. 
In point of fact, disability is NOT a fate worse than death. When people become disabled, they must grieve the loss of abilities they had, just as a parent might grieve the loss of a child, or one grieves the loss of one's home after a natural disaster. But no one would suggest it's a good idea for the bereaved parent or survivor of a natural disaster to commit suicide, much less that she/he be helped to die.
Ruth Enns, a disability leader from Winnipeg and the author of the book: A Voice Unheard: The Latimer case and People with Disabilities stated to CBC News:
She said assisted suicide allows doctors to choose when their patients will die. 
She added Canada is already a place where disabled people are devalued and doesn't believe any safeguards could help protect the vulnerable and disabled from being pushed to assisted suicide. 
"I grieve for [Susan Griffiths], and my sympathies are with her family. But I also grieve more for the people she has harmed in the process," said Enns.
Winnipeg lawyer, Dean Richert expressed his concerns in a CBC article about the discrimination that already exists against people with disabilities:
legalizing assisted suicide could send the wrong message about the quality of life for people with disabilities. 
"There's already a devaluation of people with disabilities," 
The Council of Canadians with Disabilities questioned in their media advisory:
"why Griffiths has not been offered suicide prevention support. The Council of Canadians with Disabilities (CCD) is a national organization of people with disabilities working for an accessible and inclusive Canada."
Amy Hasbrouck & John Kelly
Hasbrouck told CTV news in an interview:
“When a person with a disability wants to commit suicide, everybody thinks, ‘Oh, that’s a great idea, because they’re suffering,’” 
“But when a non-disabled person wants to commit suicide, society mobilizes itself to prevent that suicide even to the point of curtailing their liberty by putting them in a psychiatric facility. 
“And our concern is where that double standard comes from. And that double standard comes from an assumption that life with a disability is a fate worse than death.”
Enns emphasized the effect of discrimination towards people with disabilities in her article: Assisted suicide would jeopardize people with disabilities. She stated:
We recognize bullied teenagers who choose to end their lives have been pushed to that extreme. We do not seemingly recognize people with disabilities are also bullied and often socially isolated. 
Such obvious prejudice in our culture constitutes cultural bullying and emotional abuse leaving many people with disabilities feeling emotionally abandoned, worthless or traumatized. How can we say choosing assisted suicide in the face of such a strong negative bias is any more rational than the "choice" of the bullied teenager? In this cultural script of life, legalizing “death with dignity” would strongly imply that if we become burdensome, we become undignified and unworthy. If we want to be worthy, we should bow out.
Hasbrouck explained how Griffiths case proves how the debate concerning assisted suicide concerns attitudes towards people with disabilities in society. She stated:
We have a policy to prevent suicides, and rightfully so. We apply this policy to people whose despair arises from social as well as psychological stresses; bullied adolescents, LGBT people who’ve been persecuted, Aboriginal people struggling with poverty and loss of cultural heritage, and survivors of domestic violence. 
People with disabilities who lack services and supports to live in their homes and be integrated in their communities face the same discrimination and social stressors. Suicide prevention policies and services should be applied equally to disabled and non-disabled people, without bias or prejudice about the quality of life with a disability. And society must begin to address the underlying discrimination and stigma that create the conditions in which people with disabilities live.
Enns shows out how the issue of assisted suicide becomes more dangerous for vulnerable people based on the fact that doctors in jurisdictions where it is legal, will often ignore the safeguards. She stated:
Alex Schadenberg of the Euthanasia Prevention Coalition has shown that in Belgium the safeguards are routinely ignored, and of those doctors who ignored them, most didn’t even realize they had strayed from assisted suicide to euthanasia and even murder. 
Where was the choice for these doctors’ patients?
Hon Rob Nicholson
The government of Canada continues to recognize the importance of maintaining its laws protecting people from euthanasia and assisted suicide. Hon Rob Nicholson, Attorney General of Canada stated:
even though the issue is “emotional and divisive” for many Canadians, he has “no intention of reopening this debate.” 
He said in a written statement, “The laws surrounding euthanasia and assisted suicide exist to protect all Canadians, including those who are most vulnerable, such as people who are sick or elderly or people with disabilities.”
Shelly Glover MP
Nicholson was supported by Conservative MP Shelley Glover who stated to CBC:
Parliament voted against allowing assisted suicide in 2010 because they believe they were "doing the right thing." 
She said she understands the difficulty of the issue because her own daughter has terminal brain cancer. 
“I’m deeply affected by this situation, which is why I voted against it in 2010,” said Glover.  
“I’m sorry for anyone who finds themselves in this position, but I believe we’re doing the right thing.”
Hasbrouck, from Not Dead Yet, concluded her article in this way:
Does the media orgy around Griffiths story mean that we believe the everyday realities of living with a disability are reason enough to get help to die? And should the media rise to the bait every time a person with a disability flaunts their suicide in the public square.
Legalizing euthanasia or assisted suicide intrinsically devalues the person who society has deemed to be "Not Worth Living". Whether it is an individual decision or the decision of a physician who has decided it was in the "best interest" of the person, the act is carried out by another person who carries a social and societal bias towards the lives of people living with certain conditions.

Why has no body asked the question, why did the doctor in Switzerland decide so quickly that Griffiths should be given the lethal cocktail? The article from CBC news stated that the meeting with the physician in Switzerland took only a few minutes. This was a doctor who had never met Griffiths before and decided in a few minutes that she was good to go.

It is interesting that on the same day as the media orgy around Griffiths death at the Dignitas assisted suicide clinic, assisted suicide groups in Switzerland were complaining about a government sponsored study to find out what is actually happening with assisted suicide in Switzerland.

To learn more about the current practice and abuses of the Belgian and Netherlands euthanasia laws, by ordering the book, by Alex Schadenberg ($20 includes shipping): Exposing Vulnerable People to Euthanasia and Assisted Suicide. Exposing Vulnerable People will prepare you to oppose the legalization of euthanasia and assisted suicide.

Thursday, April 25, 2013

Historian Götz Aly: The Victims of Nazi Euthanasia Have Been Forgotten



German historian Götz Aly is an expert on euthanasia during the Nazi era. In a SPIEGEL interview, he discusses why many accepted the murder of the handicapped and mentally ill, and how his own daughter has shaped his views on how the disabled should be treated today.

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.

T-4 Nazi euthanasia center.
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.

Nazi euthanasia victims
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.

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?

White Rose campaign members
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.

Cardinal von Galen
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

Printfriendly