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Caregiving

A sort of silhouetted, blurry, hands and body of a horror film-like human figure. They're behind matte glass. The photo is black and white.

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 …
Close up of three hands. An elder's hand lays between the hands of a younger person's two hands. All three fair-skinned hands rest on the younger adult's lap.

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 …
Indoors. A plastic Starbucks container of iced green tea and a dented, silver reusable Klean Kanteen brand water bottle sit on a dark wood grain table. To the left of them, two brown Starbucks napkins are soaked with liquid and ice. Other customers in the background.

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 …
Two younger, dark-haired people with long hair - one brown-skinned, the other fairer skinned - in a living room. The fairer skinned person, wearing blue scrubs and a stethoscope around their neck, is standing beside the couch where the other person is seated. They're both smiling at the camera as the standing person passes a wooden tray with a white bowl of food and a glass of orange juice to the seated person.

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. …
Julian sits in his power chair and raises his arms against a poster of a hawk's wingspan.

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.
Lit up letters spelling "Fix Immigration now" against a dark blue sky with people standing behind the letters.

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.…
An envelope that says "Official Election Mail."

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…
Photo showing a person kneeling down, assisting a person sitting in a wheelchair with putting on a sock.

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,…
Close up of doctor and patient sitting at the desk near the window in hospital

Doctors Need to Believe People Who Are Disabled and Undiagnosed

When you’re disabled, people expect your story to follow a predictable trajectory: you experience a symptom (or a litany of symptoms), you see doctors and specialists, tests are run, and at some point, you receive a diagnosis. Though it might…