John Kelly Gives His Take on the NDY Protest of the World Federation Conference

Bright pink Not Dead Yet T-shirts already filled the wide sidewalk in front of the Embassy Suites when I arrived the morning of Day 1 of the protests.  My first assignment was to engage conference attendees who were looking for conversation. I met Janis Landis, vice president of Final Exit Network, the American host group, on two of her forays into the protest site.

Landis, a trim older white woman, told me that she understood our position but that we did not understand theirs. She defended FEN’s assistance in the suicide of Arizonan Jana Van Voorhis, basically saying that Van Voorhis ‘s psychological suffering was real enough to warrant the organization’s assistance. (Jana Van Voorhis, a mentally ill woman without serious physical illness, was helped in killing herself by FEN volunteers, as documented by the PBS Frontline episode “The Suicide Plan”.)

Before I came to Chicago, I submitted an op-ed piece to the Chicago Tribune detailing some of the horror stories out of Europe. I decided to use the piece as my speech during the opening program, especially since by then I didn’t expect the Tribune to publish it. Afterwards, a tall affable white man dressed in the jacket and slacks of the academic elite came over and asked me for a copy of my speech. ”I liked what I could hear of it,” he said. He told me that his name was Lewis Cohen and he was writing an article for the Atlantic Monthly, and also working on a book about assisted suicide. He told me he was a Massachusetts palliative care doctor who pushed for the assisted suicide referendum question in 2012, and congratulated us for our victory.

I found a clip of Cohen from 2012, in which he said of the Massachusetts assisted suicide bill, “This is something that gives people confidence.” Against the evidence and disabled people’s own experience, Cohen said that doctors are able to predict someone’s death.  He did agree with me – and even started his tape recorder, when I talked about the class makeup of the early and current death proponents: white, wealthy, well-educated, secular, and relatively fit. These people, I said, approach life as a buffet table of choices, in which they are in control and can predict outcomes. For the rest of us, life is immediate and chaotic, with daily struggles to get our needs met uppermost in our minds. I suspect that Cohen is one of the disturbingly large group which understands and accepts many of our criticisms, but supports assisted suicide anyway as a boon to himself and his class. I would think being a public advocate for legalized assisted suicide would put your qualifications for easing people’s pain into question.

(Editor’s note: Conference attendee Thaddeus Pope tweeted a picture of conference attendees at a presentation – they appeared to be all white – and Pope made note of the lack of diversity in his tweet.)

The rest of Thursday went by with lots of great chanting, and on Friday we were bolstered by the arrival of a bus of ADAPT activists coming from their Little Rock action. Not Dead Yet troubadour Elaine Kolb brought musical instruments to the protest, so I got to whack a cowbell with a stick in my mouth and hum into a kazoo that I don’t think many people could hear, as the chanting was very loud!

In the afternoon, I got to be part of a small delegation to the Tribune building, where we didn’t have much luck getting the attention of a distracted lunch-eating radio staffer. The Tribune had run a puff piece on the conference, essentially a pro-assisted suicide press release with first paragraph. We asked why we were getting no coverage, and I gave her a copy of my op-ed submission. We left doubting that we would ever hear back or see a reporter on site.

A plan was hatched on Friday to block enough doors of the hotel so that conference attendees leaving for their gala dinner ½ mile away would have to pass by chanting protesters. I was part of the group that blocked one end of the driveway and then the doors connecting the hotel to the valet parking area. I was nervous but everyone else seemed matter of fact, including Granny, an African-American scooter user in her 80’s and a long time Rochester ADAPT activist.  Three angry guys forced open the door that I was next to, bending Rochester ADAPT activist David’s cane, but they were not part of the conference. After they got through, I belatedly parked my 550 pounds of wheelchair in front of the door edge. We kept the doors blocked for a while longer, until the police negotiated that door to be opened. Once reunited with the other protesters, we learned that the partygoers did have to walk the gauntlet of Not Dead Yet protesters.

The intense experience of group action, the police, and all the comings and goings of our leadership as it improvised tactics on the fly, made me think of what Texas member Heiwa Salovitz had told me the day before, that these protests are a “good bonding experience.” Obviously, we’re not there to bond. But, here and now, in the early part of the 21st Century, most of us maintain our communication and connectedness with others through social media. Being together for days, short on sleep, voices shot – all toward a common goal – we all connect in a way that doesn’t happen anywhere else.

That night, we learned about the plan to shut down all four elevators simultaneously as the conference delegates went to breakfast.  I joined Diane Coleman in the atrium lobby of the Embassy Suites the next morning at 7:15 AM to watch. At 7:40 AM, everyone in the lobby tipped their heads up towards the protest chant echoing down the hollow atrium from the 17th floor. Hotel guests emerged from their rooms to watch as staff and guests were bewildered. We got to see the dropping of the Not Dead Yet banner from an upper floor, even though it was quickly snatched down from below.

No elevator moved for almost an hour – we shut down the hotel! (We were told that we were a fire hazard, but promised to get out of the way if there was an actual fire.)  I eased over to the stairs, and watched conference attendees sputtering and muttering out of the stairwell, some complaining that “It’s not fair.” Just as the full impact of what we had done was occurring to people, Richard Côte – leading American death advocate  and author of a bowdlerized “history” of the Death Movement – walked by Diane and said “Good turnout!” A Final Exit Network member came over and started leaning over Diane’s shoulder looking at her cell phone screen, meanwhile spouting nonsense about how the group does not target non-terminal disabled people, which is belied by their website.

A hotel official came over and told Diane that she would have to leave the hotel because she was not a guest. Diane calmly said that she was invited by one of the hotel’s guests (NDY Board member Carrie Lucas), explained to him that many different people and disability groups were participating, and offered to call up the leadership team to discuss how to resolve immediate situation. That was not satisfactory.  She also agreed to leave, but only as the last person out. When the police did get the elevators going again, escorting protesters out one by one, the chanting started up in the lobby and continued on the street outside, “We don’t need your suicide; Not Dead Yet keeps us alive!”  We rejoined the ongoing vigil, and the civil disobedience concluded with our message delivered.

5 thoughts on “John Kelly Gives His Take on the NDY Protest of the World Federation Conference

  1. Thank you, John Kelly, for sharing your experience of civil disobedience in Chicago! I’m sure that all who witnessed your protests who were not part of the Final Exit Conference had something to think about. The disabled and very elderly are generally invisible to the younger generations who are polite when contact can’t be avoided but mostly disinterested because they have better and more exciting things to do.

    I watched the program on Frontline about the underground in assisted suicide on my computer and it made me physically sick for a moment when I realized how dangerous these people are —-because they believe that they are doing the right thing even though they know “assisted suicide” is against the law. Compassion and Choices even has counsel who instructs the members on how to avoid prosecution for helping others, often strangers, to kill themselves.

    I had no idea that the “underground” movement was that active in Compassion and Choices and was amazed and appalled that these people cannot see what they are doing and how dangerous it is to insist that the State legalize the “lethal” prescription written by the palliative physician. How can they not see and recognize that the involuntary euthanasia of the elderly/disabled/the poor is already a reality in this country because of fiscal considerations.

    Are these people being used by the forces of “big money?” You know my thoughts on this, as expressed on my comments on many blogs. Even the higher court in the Cruzan case warned in the deliberations about the danger of giving physicians the power to shorten life without the informed consent of the patients and this is why, under Missouri law, two witnesses must sign to the consent of the patient or the patient’s surrogate to the DNR code that is placed in the hospital chart. But, of course, Missouri appears to be ignoring this law.

    I realize now because I know that Mass General Hospital has had a unilateral DNR Code Status policy since 2006 that the law and administrative rule has moved to render Medicare/Medicaid insurance, the safety net for the people, a managed health care and managed death plan. Obviously, this managed plan will ensure that the profits of Big Insurance and Big Hospital will be protected as fee-for-service is abandoned and reimbursement for treatments, to include end-of-life treatments, are denied.because of the criteria used in managed care and managed death that is intended to save money for the insurers.

    How did this happen without consulting the people. Since both political parties in the Congress are complicit and won’t tell on each other, they are not going to tell the public what this means?

    Dangerous times ahead!. .

  2. John, thank you to you and all of my sisters a nd brothers who are actively resisting the Better Dead Than Disabled movement. You are awesome.

  3. “it’s a good bonding experience”

    The debate over the assisted suicide, the so-called passive euthanasia has become an epidemic plague. I have seen it, in Holland, when organisations that sought to impose the law on killing advised their representatives to present during the debate only individual cases with terrible suffering and horrible pain. Any discussion of the SOCIETAL consequences of the law on killing, so their advice, should be suppressed and blocked. They should always speak of the “right to die” and whoever puts this right in question should be presented as heartless, cold and as suffering from a lack of empathy. In many forums commenting the debate that is actually in progress in the German Parliament, you can see that the same pattern of argumentation is being repeated. But, so I ask, is there not also social suffering? Social suffering and pain that is perhaps even more unbearable? Already now, by the debate about killing alone, there has been created endless suffering and pressure especially on elder people, who are still taken care for in their families at home, to fear for their lives. What about the many people who are poor, lonesome, housed in some retirement’s home or other institutions? To all of them the knife is set to the throat already now. They all see themselves threatened by death due to the monstrosity of this debate. A public discussion fomented by pseudo-dilemmas such as if and under which circumstances killing of humans should be allowed. If someone like the former Chief of the German Medical Association, Vilmar, launches a debate on the “socially acceptable early death”, or if the former German Chancellor Schmidt says openly that “one should think about the necessity to kill elder people”, or if a Japanese Minister of Finances prompts handicapped people in need of care to “accelerate their demise”, this is an epidemic plague, an ideological virus, that is being spread, and those who are afflicted by this virus are invited to catch the spirit by sharpening their knives, deciding which parts of the society are to be sacrificed.

    An evil light is being shed on a society, which is allowed to boast about the voluntary approval of both their murderers and their victims in the matter of reducing and even cutting short life. Because a society is composed of social beings. But a society, which is no longer able to differentiate between social beings and its decomposition must probably be considered to be in its entirety a pretty dead society. Peace to its ashes? This too, besides other issues, remains a yet unresponded question directed to the future and to each single one.

    Both euthanasia (some call it euthaNAZIa) and assisted suicide mean that there is a war going on, a war against the old, the ill, the weak, a war against us all. Like a horse who broke its leg people are shot, not by a roaring gun but secretly behind closed doors by a syringe, so no noise of the dying patients shall alarm us.

    But people begin to see through that poisoned fog and fight back.

    I express my deep solidarity with your protest. Indeed, “it’s a good bonding experience … we all connect in a way that doesn’t happen anywhere else”, as you write.

    Recently, in Frankfurt (Germany), a man had bothered the President of the so-called German Society for Dying with Human Dignity (the German branch of the International Exit Network) while she was giving a lecture on assisted dying by launching a stink bomb at her (the President was stinking for a while). Can you blame him? The man was protesting against euthaNAZIa. There are also other ways of protest. I refer to the activities of the Patients’ Front and of the Socialist Patients’ Collective, activities designed with the needs of the people in mind. See their multilingual webpage: http://www.spkpfh.de .

    Solidly united

    Hans Drager

    1. Thank you for your comments and especially your news and views on the euthanasia/assisted suicide battle in Europe. We do feel like our lives under assault from many directions and through various means. I will be checking out the website you shared later today.

      In solidarity,

      Stephen

      1. Illness-species is the strongest bonding force, for it is not only a matter of the single one but it is the unity of the species, being vigorously effective, offending by illness even at the far-distant place of its accomplishment (tele-pathically). Warmth, too, propagates and procreates itself, even pack ice is no obstacle. Also, music and its paranormal (we say: thermomimetic) effects are carried by warmth, thermomimetics being their modus in practical use.

        How a death diagnosis of the medical doctors was once invalidated and why a young woman, who was declared “nonviable”, today is still living

        For lack of knowledge the patient trusts the medical doctor. It is the physician and his diagnosis that the patient bases his decision on, the decision to live on or to die. But: medical diagnoses are in no way matter of facts. They are merely “expressions of opinion”. In Germany, for example, this was stated by the Highest Court again and again on the question of the reliability of medical opinions in court. And also, it is always said to get a “second opinion” of another doctor. Exactly: the medical diagnosis is an opinion, not a fact. You don’t even have to think of the myriad of misdiagnoses and medical errors, the ones that are collected in statistics, not forgetting the so-called dark figure, that is, the estimated number of undetected cases, a number nobody risks to really give.

        There is no reason to have the slightest hope that it would be basically different in the case of a medical death diagnosis. As already said: the patient makes everything conditional on the opinion of the medical doctor. And on this groundless ground the ill person should decide on life and death?! “Self-determined”, no way!

        And it is not only the diagnosis. The physician also sets the therapy. Couldn’t it be, that soon after introducing a law for dying, killing becomes more and more the preferred therapeutic method? Is it entirely ruled out that a statistically significant correlation arises (of course, this statistic will never be surveyed) between the doctor’s inability to help the patient and the proposition of this very doctor that it were the best for the patient if he died? Cause of death: the medical doctor.

        How a death diagnosis of the medical doctors was once invalidated and why a young woman, who was declared “nonviable”, today is still living – read on the internet: “Diapathics of a Resurrection” (http://spkpfh.de/Diapthics%20of%20a%20Resurrection.htm )

        in solidarity

        hans drager

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