“Isn’t it depressing?” my kind and compassionate activist-artist friend, Jung-In, earnestly asked, when I told her I was the live-in caregiver for an elder with disabilities.
She went on to clarify. “I mean, everyone wants to be around babies, but when you’re taking care of Grace [Lee Boggs] or Baba Baxter, don’t you get depressed?”
Grace Lee Boggs, one of our seminal revolutionary elders, died at age 100, and I was honored to be part of her caregiving team in her final years. Baba Baxter Jones, another Detroit revolutionary, uses a wheelchair, and has spinal cord and traumatic brain injuries. In asking her question, Jung-In was openly addressing the discomfort and resistance most of us experience when we are in the presence of PSWD (people surviving with disabilities), especially the highly visible forms of disability that require obvious accommodations.
She was revealing her own biases, and projecting her own feelings by asking the question. But don’t these feelings pop up for the rest of us, in our most honest moments?
I understood her question because I had wondered long and hard myself, if I could handle the task of being Baba’s live-in caregiver, before I committed to it in March 2017. Even though I had taken care of my parents in their final months and years, participated in Grace’s care, and devoted years to caring for my own three children, and even though, as one friend observes, caregiving is in my lifeblood, I wasn’t sure if I could handle this job. I didn’t know if I could be the live-in primary caregiver for someone needing significant, ongoing, day-to-day care, with mobility, nourishment, hygiene, emotional support, and medical and legal advocacy.
I’ve now completed Year 1 with Baba. To answer Jung-In’s question, NO, it’s not depressing.
|Poster by ADAPT|
Challenging, absolutely. Humbling, most definitely. Overwhelming? At times. But depressing? Never. In fact, I’d say that caring for Baba, as well as Grace, and each of my parents, has been inspiring, incredibly life-affirming, and profoundly instructive.
But I empathize with Jung-In’s question because it’s easy to see how some would run away from my position. Being around someone with a severe disability makes us squirm. We naturally feel uncomfortable. Our feelings can range from pity, to fear, to shame, to morbid curiosity, to admiration borne of guilt.
Recall what it feels like to see a person who is homeless on the street. We tend to avert our eyes, we don’t know where to look. What if they ask for money? We might have a little change, but we’re trying to pay off our debt, or we have mouths to feed, or a mortgage to pay. We feel guilty because we have homes, at the same time we feel relieved that we’re not in their position. We might be woke enough to not blame them for their condition, but we hesitate to cut them so much slack that we could imagine ourselves in their shoes. It’s triggering to see someone so vulnerable, and we are eager to draw a strong boundary between them and ourselves.
I’m recalling the 1994 winter Olympics. My 6 year-old daughter, Katja, saw a beautiful, elegant woman figure skater on TV, and she said, “That’s me,” her eyes glued to the screen. In the next moment, there was a commercial for an international humanitarian agency, soliciting donations, featuring a hungry, sullen, glassy-eyed child, meant to evoke pity. Katja, without skipping a beat, said, “That’s NOT me.”
Just like Katja, we consciously or unconsciously feel compelled to separate ourselves from the suffering, poor, needy, elderly, and disabled. “That’s NOT me,” we want to believe, and we move on to the next thing.
PSWD and those who are homeless are often treated similarly. Everyone professes to love and admire Baba Baxter, but only a handful actually show up to assist him. The degree to which we can show up, I’ve come to realize, is the degree to which we have come to terms with our own vulnerability and dependence. Those who have the capacity to be most present are those who have had the privilege of working through these issues. Maybe they’ve cared for loved ones, or are PSWD themselves. They’ve learned how to cultivate healthy interdependence, and how to ask for help. Often because they’ve received help themselves, they make it a priority to give it when needed.
If we have experienced suffering in our own lives, perhaps we’ve softened enough to be present for others. Grief, loss, injury, and illness give us the insight and fortitude to dismantle the ableist within. They also help us to realize that each of us is only temporarily abled, and that at some point, we are highly likely to be disabled ourselves, and dependent on others. The spiritual task is not to avoid becoming dependent, but to cultivate the capacity within to gracefully ask for and receive help.
For the first six months of caring for Baba, I resisted many of his requests. I didn’t understand why he wanted things a certain way, and I couldn’t identify with all his preferences. “Wouldn’t it be easier if ….?” I constantly questioned, until my ableist lens starting to thin out, and I started to see the world through his eyes. What I interpreted as a minor annoyance, was for Baba a gross injustice, or even a safety threat. It’s exactly the same way I may experience a racial microaggression, that to a white person would seem inconsequential. To an outsider, I could even seem unreasonable, hypersensitive, and delusional. Because the white person has not been in my shoes, they may not recognize racism, nor have they been harmed by it. In fact, they have no doubt benefitted from centuries of white supremacy, which makes it even harder for them to recognize it, much less dismantle it.
Ableism works exactly the same way. It’s not just about complying with ADA law. It’s also about the root causes and attitudes that perpetuate lack of access and rights. We begin to dismantle ableism when we say: that PSWD IS me. I could quite easily, in the blink of an eye, be that person. In fact, in many ways, I am already that person. We choose to be in alliance with PSWD, not out of guilt or pity, but because we cannot be whole without accepting the inevitable demise of our abilities, and the concurrent blossoming of interdependence. We are inspired by the life stories of PSWD, their resilience, sense of humor, resourcefulness, and the wisdom they have gained. They are leading the way for us to eventually renounce our own abilities, and embrace our own transformation to come.
In full disclosure, it's taken me decades of activism--beginning with feminism, to anti-imperialism/anti-war, to anti-racism--to finally come around to anti-ableism. Of course I always supported it intellectually, but to embody it fully and embrace it has honestly taken me decades. And I'm still very much learning, still constantly stumbling and finding blind spots.