Caregiving

Very Unfair: The Nightmare of Institutionalization
Like so much in this dystopia, care is about money. And disability is most certainly expensive. The durable medical equipment, medication, personal care, transportation, home modifications—the shopping list goes on. And everything tagged “accessible” is marked way up. Until I …
A Life Worth Living: An Elegy For My Mother
CONTENT NOTE: discussion of systemic ableism, death, end-of-life care, and euthanasia My mother and I were always a team. When my Girl Scout troop had a roller skating party, my mom strapped skates to my feet, took hold of …
The “Imperative of Efficiency” and The Importance of Interdependence
“The experience of illness is one of dependency, and the social mores of our day regard dependency as weakness.” — New York Times review of Megan O’Rourke’s The Invisible Kingdom: Reimagining Chronic Illness The Starbucks iced green tea and …
A List of Demands: A Living Wage for Home Care Aids Supports Disabled People
I am angry—angry that Fair Pay for Home Care was not fully funded in New York’s budget in January 2022. And angry that the small pay increase that was approved won’t solve New York’s severe shortage of home care workers. …
Hawks Say, “Help for All!”
Julian introduces his friend Gunnar the Hawk from Woodland Park Zoo, and shares how people and animals of different abilities and disabilities can do all kinds of things when we get the help we need.
How Proposed Changes to Public Charge Will Make It Hard to Immigrate with a Disability
Immigration is already an expensive, difficult process for anyone—but it might soon become even harder for immigrants with disabilities. In October 2018, the Department of Homeland Security proposed a rule change to existing laws surrounding immigration known as public charge.…
One Way to Make Voting More Accessible to the Disability Community? Vote-by-Mail.
This post is part of a partnership between #CripTheVote and Rooted in Rights. If I start with the beginning of my voting story in the early ‘90s, it is one of compassion and support, when two nice volunteers from either…
Home Health Aides Help Me Live My Life. We Need to Pay Them Better.
When I decided to begin living on my own after my mother’s stroke, I knew I would receive an increase in the number of weekly attendant hours assigned to me. Since I required assistance with several activities of daily living,…