Remember that scene in Indiana Jones and the Last Crusade where he comes barreling down the stone passageway into what looks like a giant, bottomless cavern? He teeters there on the edge and we watch the pebbles from beneath his boots drop into oblivion. He has to cross this chasm somehow to get to the holy grail, but the impossibility is an illusion. He scatters some dust in front of him and the path is revealed. Still treacherous, but undeniably there.
The distance between who I really am and who I think I am is a humblingly long way. Getting close to the person I mean to be is a daily leap of faith. I know the good, the relief, the unmatched belonging that is the reward of closing that gap is achievable.
Unfortunately, knowing alone doesn’t close the gap.
Some days I wonder if I’m actually made of biases. I feel like I may not have a single thought that isn’t “for” or “against” something.
One of the things for which I am most grateful these days is Healwell’s interdisciplinary online community where health care providers and advocates of all stripes gather to virtually connect about complicated and real issues like racism, bias, ableism, access and other bits that can become unhelpfully contentious “out there” on Facebook and in other unmoderated formats.
One of our members recently posted an article about a 45-year-old woman who died essentially as a result of ableist bias on the part of a number of the providers who cared for her over a period of weeks after being hospitalized with a rising fever of unknown origin.
As I read the article, I was horrified at the overt and also the less conscious, but still thoughtless acts of providers on this patient’s team. I shared the outrage of my fellow community members and thanked our colleague for sharing the article. The person who shared the article has lived with debilitating rheumatoid arthritis for more than 40 years and has used a motorized wheelchair for the last 20 of those years. She is a tireless, endlessly patient and downright funny human who, among other things, advocates for access and rights for people living with disabilities.
The thing is, while I want to feel confident that I wouldn’t have done or said some of the most terrible things reported in the article, I have had and even still have some of the same biases that these providers who do not live with disabilities have. The biases that informed their truly dangerous and unethical care.
I have worked with patients and wondered, “Why would you want to be alive ‘in this condition’?” I am always saying that quality of life is a moving target, but as I read the article, I had to admit that, in my heart, I find it incredibly hard to include in the calculus the lives of people are having an experience so unlike what I assume I’d want.
Human brains suck at considering their realities from any perspective other than their own. I have a human brain. I consider quality of life from my own perspective. I “can’t imagine” living in a wheelchair. I “can’t imagine” what life would be like if, like the woman in the article, I could not “speak” exactly, but more make sounds that became meaningful only to those who knew me well and were patient and attentive enough to care about what I was trying to communicate. I “can’t imagine” having lived like that for 45 years and choosing to be a “full code.” I “can’t imagine” wanting to be resuscitated if my condition or illness worsened to the point of cardiac arrest.
I have been in this place with patients.
I am a massage therapist, so I have what one of our community members recently referred to as the “golden gift” of being invited into the space of caring for the very sick without any expectation that I will cure them. I don’t help them make life or death decisions and my care will not determine if they live or die.
That doesn’t stop me from being repelled by some patients and attracted to others… all on the basis of my biases.
I have stood in the halls of Children’s National Medical Center holding the palliative care or the complex needs team census in my hands. There are sometimes 40 or more patients on the census. They won’t all get massage therapy. There just isn’t time. I have 3 hours to see as many as 12 or 15 who have been “prioritized” for massage therapy. On my best day, I might see 10, but usually there’s time for more like 7 or 8 if everything goes smoothly and smooth is not a thing that happens for many of these patients with any kind of regularity.
As I peruse the list, it’s clear that I am just a big ball of biases. I suddenly feel like I’m filling out the “superlatives” ballot for a bizarre sort of yearbook.
“Most likely to benefit from massage.” Well, that’s all of them.
Then it creeps in. I feel myself realizing that maybe what I’m really doing is more like “Most likely to smile at me,” or “Most likely to show visible signs of relaxation.”
Even these aren’t quite right.
What I’m really, really doing is winnowing the list down to “most likely to go well.”
My ease-seeking, competence-hungry mind boils down my options to find the patients who qualify as “Most like me” at the top of the list.
Patients who don’t speak English? Down a notch.
Patients whose diagnosis means that they will make utterances resulting from neurological pathology? Down again.
Patients who have parents who will ask me over and over again, “Do you think they look better today?” or “What do you feel when you touch her stomach?” No, thanks.
Off I go to see the conversant (or totally non-communicative), white, overtly appreciative patients on the list who are unlikely to spit, moan, urinate on themselves or any of a number of other things that will detract from the smoothness of things.
The size of my heart, or my compassion, the intensity of my desire to be of service – these things are not at issue here. There is no question that I want to ease suffering. It’s why I wake up each day. It’s why I try to say, “Me, too. I think that crappy thing, too,” as much as I can.
The issue is that it’s simply not enough and it’s not even honest to be outraged from the safety of my home office at the actions of providers on the vaunted “front lines” and to post and repost my anger at their inhumanity, all the while pretending that the contradictions they face, the limitations their own perspectives present are things from which I am immune.
It’s simply a lie to believe and to say that “I would never do that,” or “I would never think that.” What I know is that when the situation presents itself, I often do other than I would tell you I would do if you gave me a hypothetical “what if you were asked to see a patient who…” scenario in a bar or at the dining room table.
We must challenge each other. We must ask questions and hold each other accountable for our unfounded and harmful assumptions. We all have them. Every single one of us. Quality of life for me is not the same as quality of life for you and I can’t hear you tell me what it is if I’m deafened by my own beliefs about who is worthy and who is not.
We can only throw illuminating dust on our own path, but maybe if you do it and then I do it and others keep doing it, we can all move away from the optical illusion society has set for us that true connection and seeing are a bridge too far.