How much different would the course of my life be if I had someone, or a group of people, watching over me and offering wisdom, guidance, and support? People who could witness my strengths and weaknesses and give meaning and purpose to them? People who understood my experiences because they also lived them and could offer knowledge specific to that context?
In an interview with Sherri Mitchell/Weh’na Ha’mu Kwasset about her book Sacred Instructions, she tells the story of how she received a new name as a young adult. The elders of her community were responsible for watching her grow, for identifying the gifts they saw in her and reflect them back to her. She carried her name, given at birth by her grandmother, into adulthood. But at a certain point the elders called her in and said, “We’ve been watching you and we would like to offer you a name.” She continues:
“Serious business when you get offered a name. I had to decide: was I willing to take on that name, was I willing to take responsibility for what that name carried, was I willing to continue to honor the obligations attached to that name for the remainder of my life? What I realized in this gifting of this name was that it encompassed my medicine… the full emergence of my self, in this process of discovering that the name that had been chosen for me was actually a depiction of who I had become.”
https://www.eomega.org/audio/sacred-instructions
My experience has been very different. At various points throughout my childhood and early adulthood a number of people close to me, including family members, have asked why I was (and am) so involved with caring for my disabled brother. Sometimes the questions came from a place of genuine curiosity and unfamiliarity with the situation, like friends asking, “isn’t there anyone else who can help take care of him?” Other times though the questions weren’t really questions at all but judgments barely masking as inquiries, like when family members would ask, “you do know it’s not your job to take care of him, right?”
These are questions I’ve asked myself countless times, as I’m sure anyone who struggles with the weight of immense responsibility has. And struggle I have.
While there are many reasons why I have struggled to find meaning, purpose, and value in the work of caring for my brother, there are two interconnected strands that Sherri Mitchell’s story, when contrasted with my own, make very obvious: first is the lack of support from a nurturing and attentive community; second, there is no system for the dissemination of knowledge, no one to turn to or to help guide or instruct.
I don’t blame those closest to me for asking those questions, but it did engender an atmosphere of doubt. Not just doubt about what I was doing or if I was capable of doing it, but doubt about whether they cared about me or my brother. With the very important and notable exception of our mother, the disapproval from everyone else was obvious and it compelled me even more to take on the responsibility that they seemed eager to abandon. I never felt (and still don’t feel) like my decision to care for him was ever valued.
Perhaps my family and friends were right, that caring for my brother wasn’t my responsibility to shoulder. Maybe they were watching over me and saw that I didn’t have the gifts necessary to fulfill that obligation, but in my hubris I pushed ahead and took on that which was too much for me to bear.
Or
Perhaps my feelings of obligation and duty for the care of my brother was because not one of them fulfilled their responsibilities to him or me. Maybe no one else had their gifts of compassion and patience nurtured and reflected back to them to prepare them for the task of caring for him. It wasn’t fair to my brother that no one (except our mother) was willing to take on that responsibility, so I took it upon myself. But the work and labor of caring for someone like my brother is too much to do alone—that weight isn’t meant to be carried by a single person.
Despite the constant and ever-present struggle to find meaning in caring for my brother what is presently most difficult is the dearth of practical wisdom and guidance. Part of what makes caring for people like my brother so difficult (at least in the US) is the atomized nature of our lives. Finding others who have the skills and wisdom needed for genuine care work is no easy task, but finding those who are also siblings is nearly impossible. As I’ve said before, it’s easier to find information and support if you yourself are disabled or if you are the parent of a disabled child. There are larger, national organizations that do important advocacy and legislative work, but because of their nature they aren’t as immediately useful for individuals in the thick of it. And besides, these groups are giving information from a completely different context, one that often doesn’t translate well to my context. Where do I go to find help from other sibling caregivers of disabled brothers and sisters? No where is the answer.
There is, paradoxically, a lot of monotony and radical transformation in care work. The everyday tasks change little and become fairly predictable, routinized even. Until they suddenly aren’t. Even the slightest deviation can cause a cascade of uncertainty, and suddenly you find yourself lost and with no one to turn to for guidance. Hoping online to find answers to some of these urgent questions isn’t viable in the moment, when it’s most needed.
It’s a matter of scale, too: when, as if often the case, you are so focused on the minutiae of everyday tasks, you fail to appreciate the more gradual but still just as radical transformations and changes that occur on a larger scale. One day you realize that what was working for so long no longer works, and you are just as lost. Would someone with more experience be able to recognize the subtle signs sooner? It’s difficult to know for sure, but it’s hard not to think they would.
“A society that makes adequate provisions for a flourishing life for people with disabilities will be one in which the fundamentals of a care ethic, such as our interrelationships and inextricable connectedness, our vulnerability and dependencies, our requirement or responsiveness to and responsibility for one another are recognized and valued along with out needs for respect and self-determination.”
Eva Feder Kittay, A Feminist Care Ethics, Dependency and Disability
Where are the knowledge keepers for this work? Who holds the wisdom of giving care to people like my brother? They are out there, I know—I have even met some of them. But it seems the need is too great and their reach too limited. And while I know there exist online support groups and spaces where people can ask for help or encouragement this, in and of itself, isn’t sufficient I don’t think—as beneficial as that is. Better would be in-person instruction, demonstration even, to witness and experience firsthand the knowledge and wisdom of the elders of care. Better still would be having a model throughout my life, not a disembodied persona on the internet, but a flesh and blood human who has lived through the experience of caring for someone with a severe disability and understands the challenges and value in that work and knows how to teach it to others.
If there is a lineage of people doing this work and passing down knowledge from generation to generation I do not have access to it. If there isn’t, where do we begin?
I desperately want to find people who understand my experiences, people who share my perspective on the world because of shared experiences of the world. It’s lonely and exhausting without it. And who better to share how lonely and exhausting it can be than those people who feel alone and exhausted for many of the same reasons?
But those people are very difficult to find. They are scattered and isolated, depleted and exhausted. Creating meaning, value, and purpose out of nothing is tremendously difficult.
And there is no way for me to meaningfully explain my experiences caring for my brother to the people already in my life because these are the same people who, either through constant questioning or disapproval, have shown they are unwilling to support my decision to take on this responsibility.
Maybe this longing for understanding and shared perspectives is misguided. From one angle I can see how it might seem like I desire uniformity, sameness, that I want to find people who only share my perspectives because of shared experiences. Difference is very difficult, especially when you are enculturated to reject and erase difference in pursuit of sameness. But I think what I actually desire is merely some commonality, some shared context and values based on some shared experience.
The point to all of this, if there is one, is that I want to help others in my situation as much as I want to help myself. There is a lot more that can be said about this, about how the tropes of self-care and mutual support don’t come close to adequately addressing the problems, about the reasons this situation is isolating and exhausting in the first place, about the alienation one feels from society in general, about the radically different values this situation creates, and how it feels like all of this works against any attempt to help myself or others.
Even now, thinking about the “more that can be said” and its endless complexities is paralyzing. The rhetorical platitude of, “well, the problem is complex but here’s one thing you can do,” is infuriatingly unavoidable. It isn’t sufficient but how else do you talk about it?
“…if we see ourselves as always selves-in-relation, we understand that
Eva Feder Kittay, The Ethics of Care, Dependence, and Disability
our own sense of well-being is tied to the adequate care and well-being of
another. Caregiving work is the realization of this conception of self, both
when we give care generously and when we receive it graciously.”
What I needed was to grow up in a community of people who were understanding of the demands and complexities of caring for someone like my brother. A group of people who could model for me the ways of patience, compassion, endurance, relentless self-sacrifice, and who could nurture those nascent qualities; a community of people who were committed to the responsibility of care, who honored the sacred labor of care; a group of people who held the wisdom and knowledge needed to navigate the routine and the extraordinary.
I don’t know how to achieve this, how to reorganize my community so that the children growing up with disabled siblings can have their experiences validated, sacralized even. Not everyone who grows up with a disabled sibling will have the gifts to continue to do this work—I’m not sure I have them most days. But their experiences and perspectives are unique and valuable and should be nurtured regardless. Most importantly, though, is having people to turn to who can guide and teach in the darkest times. The labor of care is not meant to be done alone.