Re-release: Everybody deserves care—regardless of every other thing

Why I (still) want to be a social worker

Hello my darlings,

I planned to share something else this week, but then, my country’s governing bodies decided to pass a devastating piece of legislation. Its contents reveal, not for the first time (but perhaps for the clearest in our modern era) the depths of apathy and outright hatred our hegemonic structures hold for poor people, immigrants, Palestinian people, people with disabilities, Native and people of color, women, working people, trans and nonbinary people, and so many other members of our human family.

I’ll say what I said in my increasingly unhinged messages in the inboxes of my legislators (Senators Graham and Scott, and Representative Wilson): I will do everything in my power to make sure voters in their districts know exactly who to blame for all the harm caused by this legislation, My friends and I will knock on doors until our feet bleed to flip their damn seats next year. (Loving your energy, Dr. Annie Andrews!)

But if there’s one piece of hope that came to mind as I sat in my social work school class, processing the bill’s passage in the house, it’s this: we are not alone. Trauma comes from a rupture of relationships. Healing can only happen in the context of relationship, too. And if the story below reminds me of anything, it’s that healing is possible. We keep us safe. We will take care of each other. We will not leave one another alone. Not ever.

Full disclosure: this is my (adapted) application essay for my social work master’s program. Mostly, though, it’s a story about caregiving. And a story about me. So, it’s in our wheelhouse.

Please remember that one of the best ways to support independent, careful writing is to share it with your beloveds:

Alright. Onto the good stuff.

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Written Fall 2023

E has been seeing his therapist, Tom*, for over four years. 

E, like many folks with intellectual or developmental disabilities (I/DD), has lived through more than his fair share of difficult life experiences. Sometimes, E displays challenging behaviors to cope with the overwhelm of his trauma or his present discomfort. Sometimes, when people meet E, they do not understand him as a wonderful, complex, beautiful individual. They understand him as a problem.

Tom was not one of those people. And neither was I.

I am one of E’s assistants in his group home, but L’Arche is more than that. It is a community of intentional living. So while I care for E professionally, I also live in community alongside him. L’Arche, like any provider, is imperfect; but it is a place where E feels seen and known, where his gifts are named and honored, and where there is room for him to thrive. And where we worked very hard to find E a therapist as responsive as Tom. 

Tom mostly uses a traditional CBT approach with E, but often adapts scenarios, questions, and insights to E’s understanding and worldview. He listens when E names that he is having a hard time grasping something. He is responsive when E needs repetition, visual examples, or to take a break or change the subject. And he creates an environment within appointments that fundamentally trusts that E is the expert in his experience, that E has valuable contributions to make, and that E carries inside him any tools he needs to improve his well-being in the ways that he chooses. This was not an environment that E, or many folks with disabilities, have traditionally encountered in providers’ offices. 

My job in these appointments has varied over time. Earlier in the pandemic, it was troubleshooting any Zoom issues. As E’s hearing loss increased over time, and we jumped through financial barriers and insurance loopholes to fit him with hearing aids that worked, often my role was to repeat what Tom had said, sometimes multiple times, signing in ASL when helpful. Sometimes, my role was to redirect E when he got distracted, because he has named that therapy appointments were important to him and he wanted to participate fully. Other times, it was pointing to a Feelings Wheel, defining words so he could name his feelings. Or going with him to the garden store to pick out a plant to sow in memory of his deceased friend on the anniversary of his death. Or role-playing alongside his therapist to practice him setting boundaries. Or referencing his Adult Sex and Relationships class materials to answer his specific questions about dating. After appointments, I’d support him by typing notes in our system, and making sure the other assistants on our team knew enough to be able to support E with any therapy “homework” or issues he was continuing to work through, while still maintaining privacy and dignity. I often scheduled him to receive 1:1 support practicing his exercises in my role as the supervisor and scheduler for his assistant team.

Via fairygodboss.com (iconic name)

Over the time I have known him, I have watched E quite literally blossom. Every day I spend with him, I feel like I learn more about him. I don’t think I know anyone more committed to their personal growth. Daily I see him choose coping skills, self-regulate, and engage with conflict and uncertainty with grace. Situations that would have led him to spiral in 2020 lead him to communicate in 2024. He sings under his breath. He sets boundaries. He names his emotions. He says he’s sorry when he messes up. And he grows everyday.

It has been one of the great joys in my life to watch how therapy made this possible. It’s a huge part of why I would like to be a therapist working with folks with I/DD one day.

I have been a professional caregiver for nearly four years, an informal one for longer. I have known for a long time that it is the work I feel most at home with myself when I am doing. And yet I’d be dishonest if I didn’t name that there were therapy appointments, for E, that I joined not because of anything noble or valiant, but because it was my job, and I was getting paid to be there. There were still other moments where I was frustrated by his lack of progress. Annoyed by difficult behaviors. Exhausted by institutional failures. Resentful that he couldn’t hear me. Mad that Tom and I couldn’t fix his problems. Thinking, “If only he’d really listen to what his therapist is saying, maybe he’d be getting better.”

So, why social work? Sure, there are moments like I get to have with E, when I think, “Wow, we have grown so much, together.” But is it only worth doing when it makes us feel good? Or when the person you are supporting improves, or becomes more productive, or useful, or valuable, by some outside metric?

No.

We—I—do care work because everybody deserves care—regardless of every other thing. 

Because we have to believe we are all worthy of good, comprehensive care whether or not we meet a standard someone else has set. Whether or not we live with bodies others call good. I have to believe that about E, and E’s housemates. And about me. 

Care is a right. Care is essential. Care—giving, receiving—is why we are here. And—and—it feels so good to watch someone thrive because other humans helped them create an environment in which their thriving is possible. It is beautiful. It is hard work, worth doing well.

I can think of more examples. Of the person I drove to and from their abortion appointment on my day off who said, “I feel alive,” because they got to decide for themselves what their future would look like. Of the postpartum parents whom I was able to feed yesterday, the recipe I pilfered from my own parents, who taught me to always, always, bring people food, full stop. Or the parent who walked back to their child’s hospital room after having a space to speak about their pain in the Family Room at Duke Hospital. The Durham community member at CEF who worked so hard to pay off their debts, one by one, who got to watch their credit score rise, and rise, and rise. 

The person I support at L’Arche who used to always eat dinner on the couch, who ate dinner with her housemates at the table last night. The person who, for the first time in their life, had the tools to play an active role in the planning of their year in their ISP meeting. The fat person who is supported for the first time by a team of assistants who are actively confronting their own weight stigma and anti-fat bias. The person who finally has a wheelchair they can sit up fully in. Or a vehicle they can transfer safely into. Who has a faith community where their contributions are valued, visible, and important. Whose assistant said to their doctor, “The patient is the person with the answers, not me.” Or who finally saw an eye doctor who listened to their advocacy and adapted their eye test—and now, they can see. 

My friend with dementia, who is more than an under-studied and under-funded statistic about Down’s Syndrome and Alzheimer’s. Who is smart, and hilarious, and kind, and who will never have to leave his home, because we have and will continue to make it safe for him to stay in the place that he knows and loves. 

My friend, Charles Clark, who died in his own home, on his own terms, surrounded by people he loves. When he was discharged into hospice in February 2022, they estimated he’d have days to live. He died September 18, 2023, having eaten ice cream and watched the Commanders win (they never win!) just the night before, because Charles said, “This is the care I will have, because this is the care I deserve.” And he had people around him who listened. I was lucky to be one of them.

I think, even, of my own body and heart. Of the ways I have withstood in community a pandemic, a hospice journey, a national caregiver shortage, grief, burnout, failures and feedback, and the general exhaustion and frustration that can come with giving care in a broken world. And that comes with giving care in a body that experiences chronic pain. I think about my physical therapist, who rigged together a contraption to help me gain strength to do the exact pushing motions required for pushing wheelchairs uphill. I think about my therapists, who, like E’s therapist, have made space for me to feel what I need to feel, to write and make art and move and cry and laugh. They’ve then made it possible for me to log off from the appointment, and go right back to giving care, whether that means donning PPE during covid outbreaks, cooking a nourishing meal (and sometimes: ordering pizza), or holding space for my friends to feel what they feel while making that space for myself, too.

I want to be a social worker because I want that care for all people—for my friends at L’Arche, for my family, chosen and biological. For me. For the stranger I haven’t met yet but who is my family because we share a planet together. 

It takes only one look outside to see what still remains broken in our world. To see violence enacted upon people just like you, and just like me. It’s easy to list out a series of success stories, where good care was possible and where I was a part of it. It’s harder to name all of the places where I am not the best person to give good care. Harder, still, to name all of the care that extends far beyond what any one person can give. I can and will tell you why I want to be a social worker, but I am not a savior, or a superhero, or a martyr. I am just a person. But it’s just people we all need—people to be with us, to listen to us, to grow alongside us.

I believe that the work we do to care for one another will save us. I believe it is worthy work, the worthiest we can do.

And I believe that I am ready to do this work with you.

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That means YOU, OBO community. Thank you for reading. Thank you for being here.

Take care, sweet friends.

With love,

Liddy

*Pseudonym!