Hey, so like... apologies for glomming on to your post, but I agree with Maws so much that a while back I wrote an entire essay about this. With like... citations and stuff. I was going to make a YouTube video out of it, but I honestly don't have the skills for that and this seems as good a place to share it as any:
Humans and the Burden of Compassion
As a person with multiple disabilities – autism, chronic pain, cancer, among many other medical problems – I have often heard people try to reassure me that I am not a burden. I know these people mean well. I know that deep down what they’re trying to convey is that I am worth the enormous effort of others to care for me – and that message is wonderful & good and I need to hear it, as do many others.
But those words: “You are not a burden,” are wrong, and they hurt.Â
What is a burden, then? The Oxford English Dictionary defines a burden as “a load, typically a heavy one,” and more specifically “a duty or misfortune that causes hardship, anxiety, or grief; a nuisance.” It’s that second connotation we’re dealing with here - not only that there is labor involved, but that it is somehow unpleasant. Nobody wants to be the cause of that. We sometimes feel pressured to ignore negative emotions like that - what is called Toxic Positivity - but pretending that disabilities don’t involve negative emotions can be terribly damaging.
So here’s the problem with saying you’re not a burden: When your caretaker is helping you out of the tub and pulls their back, at that moment you are a burden. Clearly, undeniably. Your care has caused them hardship, anxiety, or grief, directly. If you’ve been trying to convince yourself that you’re not a burden, you will experience dissonance in this moment that is coupled with guilt and shame. For a moment, you will glimpse the truth, and it will make you feel awful. This is because what we’re implying with “you’re not a burden” is “being a burden is a bad thing, and you are not bad.” So every time your needs cause others harm or even effort, you are secretly worrying that you are, in fact, a bad person. When they clean you, feed you, pay for your needs, drive you to the doctor for the fifth time this week. Every nice thing they do for you makes you feel a little bad.
And the truth of the fact is, we are all burdens at some point in our lives. Newborn infants are an enormous burden, as any new parent knows deep, deep in their very tired bones. They can also be an incredible blessing, but that doesn’t change the fact that they are a huge drain on resources and energy. So much so that, as a community, we not only support the infant directly but also act to offset the suffering new parents experience under this burden by helping out with food, chores, and gifts. It’s a fairly universal human tradition. And that's for a normal, healthy newborn!Â
Now, you can take a very utilitarian attitude towards this: eventually, children grow and become less of a burden and can contribute materially to the community with their labor. And, as parents age and (surprise) become burdens again, the child will return the care they received. But even able-bodied adults are burdens at times, when they become sick or injured temporarily, and we do not – or at least should not – begrudge them the time & resources necessary to recover.
But what about people who are so disabled that the net effect of their life is a negative drain on resources?
Feel how uncomfortable you just got? No one likes to think about this grisly math. It goes against something deep inside of us, feels wrong. I believe this is because the inherent value of an individual human isn’t intrinsically linked to their ability to produce for the community, or even themselves. That’s not really how our current economic system looks at it, and it has serious consequences on our governmental policies concerning disabled people. But the archeological record seems to indicate that at least historically, I’m right.
Around the world, archeologists have found remains of disabled people who likely fit that bill – too disabled to contribute materially to the communities they lived in. A New York Times article recently described a man who lived in Vietnam 4,000 years ago, who became so profoundly paralyzed in adolescence that he could not have used his arms or legs for any basic functions. And yet he lived at least another 10 years. Someone – probably multiple people – would have had to care for his every need, including bodily functions. This was a subsistence-level society, people were gathering & fishing every day just to survive. But they found this man had such inherent value that it was worth the labor to care for him for roughly a third of his expected lifespan.
More examples from the NYT article:
“Such cases include at least one Neanderthal, Shanidar 1, from a site in Iraq, dating to 45,000 years ago, who died around age 50 with one arm amputated, loss of vision in one eye and other injuries. Another is Windover boy from about 7,500 years ago, found in Florida, who had a severe congenital spinal malformation known as spina bifida, and lived to around age 15. D. N. Dickel and G. H. Doran, from Florida State University wrote the original paper on the case in 1989, and they concluded that contrary to popular stereotypes of prehistoric people, “under some conditions life 7,500 years ago included an ability and willingness to help and sustain the chronically ill and handicapped.”
In another well-known case, the skeleton of a teenage boy, Romito 2, found at a site in Italy in the 1980s, and dating to 10,000 years ago, showed a form of severe dwarfism that left the boy with very short arms. His people were nomadic and they lived by hunting and gathering. He didn’t need nursing care, but the group would have had to accept that he couldn’t run at the same pace or participate in hunting in the same way others did.”
There are many philosophical arguments as to what makes humans so different from the rest of the animal world. Is it the use of tools? Art? Language? All of these things we glimpse elsewhere. Only this – the willingness – no, the desire to care for those who cannot care for themselves, even when they have no inherent productive value to the community but simply because they are a member of the community, is ours alone. We see a few outstanding exceptions among primates, but these are rare, and only parental, not communally achieved.
What the actual inherent value of a human is, beyond production, I don’t know, and I leave that much to the debate of philosophy and religion. I do know that it’s very real, and as a storyteller, I suspect it has something to do with the joy of sharing experiences, but that’s just my guess.
I am a human. I am disabled. And I am a burden. But because I am human, my fellow humans find value in me just the way I am. And embracing that has made me so much happier. Now, whenever someone has to go that extra mile to care for me, I no longer feel guilt and shame. Instead of revealing that I am a burden, these acts prove that others find me worthwhile to keep around, much more than any verbal reassurance could. I feel love, and gratitude, and the desire to return that help in any way I can. This is what makes us human: selfless compassion.
