By Rebekah D. Mason
I brought more than a suitcase, a laptop, and a stack of business cards to the American Society on Aging’s 2025 conference.
I carried the weight of being a fat, disabled, queer woman entering a state where I wasn’t sure I’d be safe.
I carried the ache of knowing my grandmother, Manuela Barrera, died alone in her nursing home.
My mother, her sisters—my aunts—and our whole family weren’t allowed in to say goodbye.
Even though federal guidance permitted compassionate care visits, the facility didn’t follow through.
She died alone. And we were kept apart.
That ache doesn’t go away.
It lives in my chest, just beneath every policy I write and every room I enter.
It reminds me that grief is not a side story—it’s the proof that the system failed.
In the final year of her life, my grandmother’s dementia worsened.
Her Spanish—which, like her broken English, was never advanced—became filled with harsh, aggressive swear words. Words my mother and aunts had never heard from her before. Words they didn’t even fully understand. They had to call older, more bilingual relatives to translate what she was shouting.
It was heartbreaking. Not just because of what she said, but because we knew:
That wasn’t her.
She left school after third grade to work in the fields. She never learned to read or write—not in Spanish, not in English. The only thing she ever wrote was her name.
And still, for years, she could walk into the Walmart on Galveston Island, sign a blank check, and hand it to the cashier—because they knew her. Because she belonged.
That’s how trust worked for her. That’s how community worked.
But in the nursing home system, she was reduced to a risk. A behavior. A liability.
She was labeled a “behavioral case.”
She was avoided. Pushed aside.
People crossed the hallway to get away from her.
My mother and my aunt—both licensed social workers—advocated fiercely. I visited Texas during that time and was able to be present at the nursing home. We had lawyers. We had each other. She wasn’t discharged that day.
But she still died alone.
Even with all our love, even with our knowledge, even with the right paperwork, the system failed her.
My grandmother had fierce advocates in her family—including me, as a lawyer; several social workers; teachers; teacher aides; and a resilient network of Mexican American women caregivers who were tired of being left out. Despite our relentless efforts, the system still failed her.
Yesterday in conference session conversation, at ASA, I said something like “We can’t fix it in the next hour, but we can try.”
And that is what we did. We discussed what’s working in MA, what’s not working in CO and Hawaii. What is the industry doing right? What are they doing wrong? How can we support the direct care workforce with dignified #livingwages and ensure workforce retention and recruitment go beyond numbers. To the heart of the person.
So I’m naming it.
Not just to grieve—but to organize.
Not just to share a memory—but to spark a reckoning.
Because storytelling isn’t the prelude to the work—it is the work.
Storytelling reminds us that policy is personal. That data has a heartbeat. That care systems either affirm our humanity—or erase it in the name of compliance and convenience.
I carry my grandmother’s story into every table where long-term care is discussed.
I carry her into every equity framework that forgets language, culture, fatness, aging, disability, or grief.
I carry her not to center my own sorrow—but to remind the field what’s at stake.
Because the work—and the outcomes—are only as strong as the most vulnerable person who can actually receive their intended promise.
I’m not giving up.
I’m showing up.
And I believe in care systems where no one dies alone. Where the immigrant women who are our loved ones and those who care for our loved ones are also safe and cared for and receive the same promise we want for ourselves.
If you’re doing this work, I see you.
If you’ve lost someone in this system, I’m with you.
If you wonder how storytelling fits into justice—this is how.
In the naming.
In the remembering.
In the refusal to look away.
ASA2025 long-term care health equity dementia care caregiving Latinx elder care grief and policy disability justice storytelling as advocacy.
#ASA2025 #JusticeThroughJoy #LongTermCare #HealthEquity #DementiaCare #Caregiving #LatinxElderCare #GriefAndPolicy #DisabilityJustice #StorytellingAsAdvocacy
