Presentation by John Kelly of Not Dead Yet
At the National Council on Independent Living
July 26, 2013
I will talk about organizing a disability rights campaign against attempts to legalize assisted suicide. I’ve got three things I want to emphasize in my talk. Coalition, Communication, and Consistency.
COALITION.
In putting together a disability coalition to work against assisted suicide, Massachusetts was lucky to have a ready group of longtime activists from the physical disability community. We formed a single issue organization based solely on opposition to assisted suicide and associated killings. We called our group Second Thoughts, a name that rewarded us by describing what actually happened during the campaign, as Massachusetts voters reconsidered their early support for the assisted suicide referendum.
Our first task was to build as broad a coalition as possible, by making alliances with other communities. First thing to do is reach for all the low hanging fruit, especially other grassroots disability groups. These groups have the ability to be more flexible than traditional agencies like IL centers and P & A agencies. They can make a decision faster. Our first in-state group to support us was the local Autistic Self Advocacy Network chapter. We also got endorsements from a state disability policy group and the board of a mental health recovery grassroots group. We connected with these groups by attending their events and supporting their causes. Personal connection is still the most effective way to build support.
The Autistic Self Advocacy Network had a vigil last year after the murder of George Hodgins, and they had another one this year, to protest autistic kids being killed by parents or family members. Members of our group Second Thoughts went to the vigils, and then members of ASAN came to our events. In presentations, I wanted to make sure that we represented the range of disabilities under threat. So I carried a picture of a murdered young man, George Hodgins. George was autistic, his mother killed him and then herself. I would show his picture to demonstrate the cultural reality of deadly disability oppression. I talked about how when the media covered the murder-suicide, some reports didn’t even mention his name, and none put his picture in the paper. The stories rather emphasized the difficulty of raising autistic kids.
We connected with the mental health recovery community, those people who have lived experience with mental health issues. Members of the MPOWER board saw that they were endangered by the proponents’ use of the autonomy argument. To the proponents, autonomy is everything – the self-directed individual making rational decisions based on a buffet of choices. Real life is messier than that. Sometimes people can get so depressed that they are not able to make a rational decision. That’s what it means to be that depressed! And so we wanted to join with such folks in order to counteract the proponents’ argument.
The proponents would claim that we condescend to people and don’t trust them. We don’t let them make their own decisions. This is so cynical because of course we are for self-direction, but we don’t want to see people in their lowest moments not get suicide prevention services, but instead get suicide assistance.
Most of the independent living centers joined our side, it just took a while. Some organizations were simply unpersuadable, reflecting the personal views of some board members. Every locale is different. For example, Connecticut Second Thoughts had a strong ally in the state developmental disability council, while we had more grassroots support.
In talking about this with other disabled people, I recommend talking about it in terms of independent living, quality-of-life judgments, and that the prejudices that kept us in institutions, that kept us home, that kept us locked away, are the same prejudices that drive the assisted suicide movement. The prejudice that if I need someone else to help me with my personal care, I might be better off dead. And if I need someone to put nutrition in a feeding tube, well that is obviously a situation that calls for death. We know better. “We love our tubes.” I have a catheter, I love it.
And then there were the faith-based groups, mostly conservative right to life folks. (Liberal groups, on the other hand, often support assisted suicide. ) This community can be a challenge. Most of the people in the independent living movement tend to be on the progressive side of issues. And here we were trying to work with a group of people whose greatest ambition is to defeat Obama and stop Obama care.
We tried to persuade the religious folks and their consultants that disabled people should be out in front on this issue. We argued that we are the ones defending everyone’s rights, just like with all of our other advocacy efforts, from curbcuts to automatic doors. National right to life leaders agreed on this issue, telling members that “life isn’t fair.”
And the reality is that No, in a democratic society with no establishment of religion, you can’t really have political discussions about God, morals, and “shoulds.” It has to be based on what actually happens, what is going on.
The proponents and the media friendly to them wanted to write the same old story about the culture war. “Progressive, liberal-minded, compassionate folks forge ahead boldly against right-wing medieval troglodytes.” They wanted “to hang the church” around the opposition’s neck. I think our most successful achievement as a disability rights group was to break that culture war narrative.
COMMUNICATION
Once you have your coalition, the next big Issue is communication, how to get out our main points and counter the proponents’ arguments. One rhetorical trick that is common these days is to accuse your opponent of exactly that which you are doing yourself. And it makes it hard to respond. Republicans are very good at this. Proponents kept saying that they wanted to get the government out of the personal relationship between people and their doctors. And our response was, “well then why are you trying to pass a law to bring the state into the relationship?” Because the essence of the proponents message is that the state should say “well, feel like a burden? Incontinent? Can’t do the things you used to do? Here, let us help you.”
We would always say that we come at this with a social justice perspective. We are concerned about the most vulnerable people. When people say, “oh, you can have such a lovely death, if you plan it.” Your father takes the drugs and everyone sings kumbaya as he drifts happily off to sleep. The reality can be very different. So we talked about issues of elder abuse, the inevitability of abuses coming from a profit-run health care system, the cost. Assisted suicide will always be the cheapest answer. We talked about self-determination. People can refuse any treatment that they don’t want.
For every talking point, we had examples. To talk about how suicide prevention goes by the boards, we told the story of Michael Freeland. He had years of suicide attempts, armed paranoia, was estranged from his family, and when he was diagnosed as terminal, he easily got a lethal prescription. When the prescribing doctor eventually stepped forward, he said that he did not think a psychological consultation was “necessary.”
Misdiagnosis – we argued practically that it is so hard to diagnose someone’s death six months out. The original impetus for that time period was borrowed from hospice. It’s great to refer someone to hospice if you think they might die within six months, not so good for making a life-and-death decision.
We had a letter to the Boston Globe from Jeanette Hall in Oregon who had sought assisted suicide but her doctor persuaded her to try more treatment, and she is alive 12 years later.
Our greatest example in Massachusetts was that Ted Kennedy had been given 2-4 months to live, but he went on to live 15 months, casting crucial votes, seeing his choice Obama elected. It was impossible for people to argue that the rest of his life was not valuable. Basically, what the proponents tried to argue was that once you have a terminal illness, the difference between being you and being dead is so small, that it’s not a matter of when you die, that is imminent, but how and with what comfort, and what dignity.
With cost, we said over and over again that we could not trust a “broken, profit driven health care system.” We cited examples of people denied cancer treatment yet offered assisted suicide.
We stressed that people already have self-determination, that you can refuse any kind of treatment, but that you also have the right to get treatment. Disabled people face under treatment in the hospital. Unfortunately, that is not widely recognized, because everyone is trying to stop overtreatment.
Abuse – the fact that there is no witness at home. You take the prescription home and that is the end of the doctor and pharmacist’s involvement. You can have those drugs two years later. Opportunities for abuse are obvious and inevitable. We cited the statistics of elder abuse, always in the thousands per year in every state.
We also made a discrimination argument, namely that nondisabled people get suicide prevention services, but ill and disabled people get suicide assistance. For a nondisabled crowd, this is a difficult argument to make, but it is a crucial one.
During the campaign process, make sure that you stay up on your dates from your Secretary of State, how to submit language suggestions and appeal any decisions. We did file an appeal, in an attempt to get the phrase “physician assisted suicide” into the title of the bill but were not successful. That is, after all, how the event has been referred to for the last 30 years. But the other side and its media friends were able to contest the reality of everyday language. So the media would present it as “what proponents call aid in dying and what opponents call physician assisted suicide.” It’s pretty amazing that such basic terms could get put up for discussion.
They talked about dignity a lot. This is a real insult to us because the obvious implication is that living a life in which you are dependent on others for your care, where you might not be continent every hour of every day, that’s not dignified.
The media is a challenge because so many of the people in it are members of the same social class as the people proposing the bill. Educated, secular, more urban, not religious in a traditional way. We had trouble getting into the media. We couldn’t get into the Globe or the Herald. They would not meet with us. Start with smaller papers first. People read them. Even local papers, neighborhood papers. Get in the Patch, use social media – Facebook, webpage, twitter, everything you can. Talk to people one-on-one about it. There are phrases that can be used.
For people who had a terrible death in their family, you can say “I’m so sorry they didn’t receive the palliative care they needed, it’s come a long way in the last 20 years. Let’s make sure that everyone has this before we start talking about assisted suicide.”
For people who had a wonderful experience with a suicide, talk to them about vulnerable people in families not so loving. Do not try to persuade anyone that there personal experience was not valid. It’s a complete loser.
CONSISTENCY –
You have to say the same things over and over again, even though the phrase “our broken, profit driven health care system” starts to take up residence in your head. And you never want to say it again, you want to say something more exciting or theoretical. But it’s no, you have to get back to that issue. You have to stick with it. And when someone asks you a question that doesn’t feel right to answer, say “the real issue here is…, or “What the voters really need to understand is… that this will lead to innocent people losing their lives.”
You want to make your talking points at every opportunity. Every op-ed you pitch, every letter to the editor you write, every comment on a webpage, figure out what they are talking about and how you can get in your main talking points.
So we stopped the culture war argument. And towards the end of the campaign, even as we all thought we were going to lose – it was 68% in favor six weeks before the election. Then there were some great articles written by disabled people and let access to the New York Times and Boston Phoenix. There were great pieces by palliative care experts, by local black leaders, and then Victoria Kennedy wrote talked about her husband Ted dramatically outliving his diagnosis.
A couple of pointers: do not give out your diagnosis. I made that mistake at the legislative hearing, when someone walked up to me and asked me what my condition was and I said “I have a spinal cord injury.” Well, next day, it was “John Kelly, who suffers from a spinal cord injury…”
Practice is very important. Before the legislative hearing – we had 10 people giving talks on different aspects of the issues, it was very empowering for people. It’s a great way to organize cross disability.
Well, I’ll stop there.