I am obliged to state…

On the first day of my INELDA death doula training in Raleigh, NC, I sat at a table with a woman who was living and working in the City part-time in 2001 who happened to have commuted back to PA on the day of 9/11 as well as with a woman who lived in Blacksburg, VA, where Virginia Tech sits at the center.

Our facilitator is INELDA Executive Director, Henry Fersko-Weiss, a man who follows the school of The Good Death while carefully avoiding such terminology as if there were a hidden trademark. He urges volunteers in training and would-be professionals to commit to a zen-like state of utility to create the most selfless and supportive environment in the deathbed room for passing peaceably. Someone from the other side of the room asks “Will we be covering the deaths of children?” Another asks “Will we be covering deaths that aren’t planned and happen suddenly—like suicides or tragic deaths?”

HFW too simply says, “No, we won’t.” He gives it a few moments. The tension in the room is thick; the finality of his certainty is too much. He finds himself explaining, “Some of the training here can be applied in those scenarios, and you can do legacy projects, but this is really about—”

Our table exchanges knowing looks through smiles.

The INELDA model is a 3-fold vigil process: the planning, the implementation and the processing. The procedure is familiar and straight forward to anyone with hospice experience, though this experience occasionally was undervalued in conversation as ‘not enough’ (of course in order to validate how doularey was the more that was needed). HFW’s unspoken urgency was that hospice, and other forms of dying care and assistance, are often times ‘too late’ or ‘last minute’, or conversely reflect a trend of more folks dying at home independently. Shock-stats of the average length of hospice stay were thrown out into the room. However, while the median length of stay in hospice is approximately 17 days, the average length of stay is at least 75; realistically, many intakes for hospice far surpass the 6 month prognosis window and are re-evaluated several times before passing.

There was an icebreaker assignment about what we all had in common that brought us to this training, narrowed down to a 10-part listicle. In true Death Café style, we summed it up in the first one, “We’re all going to die at some point in our lives,” and penned some glib observations for 2 – 9. Nothing seemed quite as poignant as the unwritten commonality: that we all didn’t die in our respective cities when the prime opportunity was there. This piece of information, while hugely pertinent and central to what brought each of us toward the death and dying field, was superfluous to this environment.

The great irony of the INELDA training weekend is that while much of HFW’s ideology encourages deep, active listening and conscious observation in order to plan and activate an individualized death plan that represents the decedent’s unique circumstances, the actual training workbook and the workup of the course is that same white, ambivalent substance as the rest of the death positive discourse. While three days is simply not enough to have a wholly comprehensive workshop on dying care and aftercare, I find it harder and harder to go back and excuse these aversions to the circumstances that fall outside of the ‘typical’ model, mostly because I resent that the ‘typical’ model is white (or ‘model minority’), financially stable, sound of mind and clear in intention, dying of natural causes in a familiar and malleable space where some idealistic ‘normalcy’ can be carved out.

The one page section on culture in the workbook, for instance, could even have been parsed down to even just one sentence. “You cannot presume someone’s orientation to their culture based on their geographic background or apparent ethnicity.” This is fundamentally true; however, neither the text nor the application created a built-in space to negotiate how to incorporate culture into the conversation. Although, at many points, HFW identifies how removed he is from his deceased father’s Jewishness and feigns ignorance to common pancultural norms, such as air kissing, by laughing off “I have no idea what that’s about.”

And while culture cannot be presumed, skin tone cannot be ignored. In a section devoted to the signs and symptoms of active dying, several pictures of patients with light complexions are used to demonstrate mottling and cyanosis, and while none of these persons should be presumed white, they most certainly are not black.

When I made this observation to a disgruntled colleague, who up to this point was vehemently agreeable, she quickly excused this as, “I’ve spoken to several African Americans, and they don’t like to talk about death in their community.“ The ridiculous of this statement is obvious—-isn’t the entire death positive movement allegedly a philosophy working against the tide of death denial in the mainstream western world? Furthermore, as Marian Gray Secundy puts it:

Death is no stranger to black folk; the reality of our lives and the historical circumstances in which we have lived have made it impossible for most of us to develop the denial mechanisms about death that can be seen in many of our Caucasian brothers and sisters.

But if we’re going to be frank, if we can’t even agree as a unified nation that Black Lives Matter, then Black Deaths certainly won’t, either. Let alone black memorial spaces. (Keep up to date with The Friends of Page Jackson Cemetery to learn more about cemetery preservation efforts in historic black spaces and the upkeep of Page Jackson in particular.)

When wheelchairs and other aids are described incidentally in the workup, they’re noted as ‘distractions’ to be moved or obscured to take away from the ‘medical’ feel of the room. I think about my own wheelchair as I write this, and how it’s marked with the same alchemical markers as the one tattooed on my right side. I think of how many people in the world are keen to ask me when and how I became a chair user, and how few people ever think to presume the opposite: that disability has always been a part of my life and will very obviously be part of my death, too, regardless of how and when I die.

“I’ve heard you use the words ‘sacred’ and ‘rite’ several times,” another student muses aloud, “Does that mean we’re performing in a religious context or….?” The working definition of ‘sacred’ for INELDA is one that is wholly secular. While there are many instances wherein the dictionary should be held with a grain of salt in its historic context (consider dictionary definitions for ‘racism’ or for ‘man’ and ‘woman’), removing the word ‘sacred’ from its religious roots is counter-posed to HFW’s introduction to doularey, which is very much centered on its alleged ancient Greek roots (δούλη, the word for a bondswoman, and δολος, the term for a man held in bondage, e.g., slavery). By removing the religiosity of ’sacred,’ the cultural component is also, cleverly and inherently, rendered flexible, particularly in the cases of eastern religions, or Christian-derivative fusion religions. The opportunity for cultural appropriation is as prime as the opportunity for naive disregard; the two are not mutually exclusive, either.

All-in-all, the INELDA training was actually a very informative and educational experience for me, and I am very glad to have done it (I’ll go into more of the positives in a separate blog post, I promise!)—but maybe for what wasn’t stated rather than for what was stated. I received my training certificate on the Sunday evening of erev Yom Hashoah, which hung heavily in my heart in the advent of the French election and in the heartland of ‘pick and choose your Jews’ Americana and surrounded by the rubble of shamed tombstones all. around. the world.

To meditate upon politician and activist Szmul Zygielbojm’s suicide letter:

The responsibility for the crime of the murder of the whole Jewish nationality in Poland rests first of all on those who are carrying it out, but indirectly it falls also upon the whole of humanity, on the peoples of the Allied nations and on their governments, who up to this day have not taken any real steps to halt this crime. By looking on passively upon this murder of defenseless millions tortured children, women and men they have become partners to the responsibility.

I am obliged to state that although the Polish Government contributed largely to the arousing of public opinion in the world, it still did not do enough. It did not do anything that was not routine, that might have been appropriate to the dimensions of the tragedy taking place in Poland….

I cannot continue to live and to be silent while the remnants of Polish Jewry, whose representative I am, are being murdered. My comrades in the Warsaw ghetto fell with arms in their hands in the last heroic battle. I was not permitted to fall like them, together with them, but I belong with them, to their mass grave.

By my death, I wish to give expression to my most profound protest against the inaction in which the world watches and permits the destruction of the Jewish people.

It is imperative that the death and dying industries and its ‘rogue’ pioneers of re-inventing relationships with death and the dying as well as the death positive conversation helmed by the individuals who are all pre-disposed to be experts due to the common denominator that we are all going to die eventually become more consciously aware and conscientiously welcoming to these truths. These are not the topics that should be reserved for ‘advanced’ certification courses or pay-to-speak conferences, let alone even be reserved for tomorrow. These aren’t the prompts for one-off posts; this is embedded in every post I’ll ever commit to this blog and every action I ever generate in my death and dying spaces.

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