Getting Down To It - August 2022
Thoughts on care from Qudsiya, host of Down to the Struts
Who is a caregiver? Who is a care recipient? Our understanding of these labels shapes our perceptions of people. As a disabled child growing up in a nondisabled household, I was always perceived as a care recipient, rarely playing the role of a caregiver. This naturally bled into my own perception of myself. I viewed care as a one-way street, from others to me.
It wasn’t until recently, in my late 30s, when my understanding of the binary of caregiver and recipient began to break down. Last summer, my partner and I were involved in a tandem bicycle crash. I broke my left collarbone, and he broke his right wrist. Together, we had two working arms between us, and collaboration was key. We both recovered from the accident, but he unfortunately sustained other injuries to his arms, making it impossible for him to lift heavy objects, and sending him into months of physical therapy.
As a blind person in a relationship with a sighted person, it’s not lost on me that, when we move around the world, others perceive my partner as the caretaker and me as the care recipient. Any behaviors that deviate from that trope must baffle those around us. We often speculate about what bystanders think as they watch me balancing heavy bags of groceries while maneuvering my cane as my partner walks beside me empty-handed.
The truth is, caregiving and receiving isn’t binary, nor is it always exactly “equal” at any given time. There are times when we give more care than we receive, or receive different care than we give. The lines of caregiver and care recipient are blurred in my relationship, but care, in all its forms is abundant between us—it is a cornerstone of the foundation that holds us together.
Alice Wong’s poignant photo essay about her recent experience in the ICU made me think a lot about care, and all the structural and systemic reasons why it is not abundant in the lives of people who need it the most. It often feels like healthcare, home-based care, childcare, and elder care are designed to do everything but care for people—rather, they extract labor and capital from those who give care as much as from those who receive it.
This month, I urge you all to think about what care means to you in your own lives. Check out Andrew Pulrang’s latest issue of Disability Thinking Monthly for some concrete actions you can take to ensure that care exists in abundance for all of us, regardless of income, race, gender, sexual orientation, or anything else.
Catch up on the podcast
The latest episode of Down to the Struts features a conversation with youth activist Lou Paniccioli about his journey to political activism as a tool to affect social change, and the role models that have guided him along that path.
I was also honored to guest host an episode of the podcast Unpacked, from AFAR magazine. In it, I interview three disabled travelers to unpack the question: How do we make travel accessible?
Building Your Knowledge
Here are three thought-provoking pieces on the importance of centering care in our world.
Moving From Survival (Disability Visibility Project)
Disabled people often struggle to arrange care on their own terms—the prevalence of institutionalization prevents them from choosing their caregivers, directing the course of their care, and having the choice to remain surrounded by their families and communities.
In her advocacy for the Better Care Better Jobs Act in 2021, friend of the pod Sandy Ho makes a powerful case for the expansion of Medicaid Home and Community Based Services (HCBS). Sandy’s vision of the future is powerful:
I don’t want to be remembered as a lucky disabled person who managed to survive the COVID-19 pandemic. I want to ensure that a quarter of the U.S. population also has the choices to live and survive with dignity during the next national crisis, too.
Unfortunately, additional funding for Medicaid HCBS was left on the cutting room floor of the Inflation Reduction Act. We still have work to do to convince lawmakers that investment in the care economy is necessary for the wellbeing of all who live in the United States.
Domestic Workers Are Misrepresented in Movies and TV, New Report Shows (The 19th*)
Media and pop culture play an important role in how we think about the world around us, and that includes portrayals of domestic workers. Journalist Sara Luterman, also a former podcast guest, shares an in-depth analysis of these portrayals across the 20th and 21st centuries. These depictions demean the valuable, highly-skilled contributions of, primarily, immigrant women of color to our care ecosystems. We need to dismantle these notions of domestic workers as less-than, so they can receive the compensation and support they deserve for the essential labor they perform.
Care Work: Dreaming Disability Justice (Leah Lakshmi Piepzna-Samarasinha)
And of course, Leah Lakshmi Piepzna-Samarahasinha’s seminal primer on care is essential reading.
Taking Action
If you’re able, please contribute to Alice Wong’s Go Fund Me campaign to help support her new care needs. Also, don’t forget to pre-order her memoir, The Year of the Tiger.
Thanks for reading our newsletter this month. Please feel free to share your thoughts, feedback, and ideas in the comments or email us at downtothestruts@gmail.com. We’ll be back in your inboxes soon with more news from the podcast and the disability community!
In solidarity,
Qudsiya