I Want Them to Want Me Because I Will Need Them to Need Me But If That’s Not Going to Work, I Want a Lawyer.

There's No Cure for Gretchen Lowe

Every time Gretchen saw the DNR forms on her desk at home, a wave of resentment rose. How did she know what it was like to use a feeding tube? Or a ventilator? Or have minimal brain function, for god’s sake? It was like asking an eight year-old to sign up for – or against – puberty.
Choice was such bullshit. It wasn’t really her choice at all. The problem wasn’t too much extraordinary medical treatment, it was the limits of ordinary medicine to worry about, mostly financial. She didn’t have a problem being kept alive through artificial means now – she’d never seen a dollar bill push out of the dirt in spring – so she didn’t see any reason to assume she would resent it later on.

“Dear Valued Healthcare Provider,

“I’m glad everybody’s so concerned about honoring my choices. I choose to have my medical care continue regardless of ability to pay or insurance coverage, deductibles, prescription benefits, or other cost issues….”


Continue reading

My Speech to the Graduates, or What I Wish I’d Known As a 5 Year-Old Crip

Ingrid Tischer on the day of her kindergarten graduation in Greece, New York, circa 1969. She is wearing a rainbow vest and skirt sown by her mom. Note the clutching of the diploma and school-bestowed book-bag, and anxious expression -- all indicate a future in literary fiction writing and nonprofit fundraising.

Ingrid Tischer on the day of her kindergarten graduation in Greece, New York, circa 1970. She is wearing a rainbow vest and skirt sewn by her mom. Note the clutching of the diploma and school-bestowed book-bag, and anxious expression — all indicate a future in literary fiction writing and nonprofit fundraising.


If the grand success of the 20th century was the rise of disability as an accepted political identity, we intend for the 21st century to be the time when disability is recognized as the constant but hidden variable in nearly all formulas for global human rights.
Including disability as a given factor in most people’s lives is essential to successfully advancing the human rights of people in minority communities; survivors of violence in the home, the school, and the street, and/or conflict zones, and as veterans; immigrant and refugees held in detention, incarcerated people, people coerced into institutionalization; people who live with chronic and catastrophic illness; neuro-diverse people; people who are young and old; male, female, and everywhere on the gender spectrum.
While disability has been understood as “different and divided” I believe it can come to be seen as “unique and united.”

As you sit sweating under an increasingly sweltering sun this day, feeling the inevitable effects of a wasteful attitude toward natural resources, you may not be thinking of another type of catastrophic loss caused by another type of massive denial. I speak of almost no one’s favorite topic: Disability.

How denying disability’s central role in just about every human life relegates significant chunks of our lives — and worse still, people-sized chunks — to the rubbish heap. It may be that “disabled” doesn’t feel like a word that fits who you are. Fine. Have you ever felt vulnerable? Think of “vulnerable” as a gateway word to a chronic case of disability-speak.

Continue reading

I Want Them to Want Me Because I Will Need Them to Need Me But If That’s Not Going to Work, I Want a Lawyer.

There's No Cure for Gretchen Lowe

Every time Gretchen saw the forms on her desk at home, a wave of resentment rose. How did she know what it was like to use a feeding tube? Or a ventilator? Or have minimal brain function, for god’s sake? It was like asking an eight year-old to sign up for – or against – puberty.
Oh sure, she fumed in the dark, awake and annoyed. Tomorrow, Dr. Gabriel would repeat the official line: She could choose all medical interventions. She could elect to have whatever she wanted.
Oh, that was such bullshit. It wasn’t really her choice at all. The problem wasn’t too much extraordinary medical treatment, it was the limits of ordinary medicine to worry about, mostly financial. She didn’t have a problem being kept alive through artificial means now – she’d never seen a dollar bill push out of the dirt in spring – so she didn’t see any reason to assume she would resent it later on.

“Dear Valued Healthcare Provider,

“I’m glad everybody’s so concerned about honoring my choices. I choose to have my medical care continue regardless of ability to pay or insurance coverage, deductibles, prescription benefits, or other cost issues….”


Continue reading