In the realm of emotional bookkeeping, there is literally no number of doughnuts that equals the cost of picking up the check at a waterfront restaurant.
The first in a series called I’m Not Finished: Memoirs of an Eater.
My maternal grandfather, Carl Pilbeam, remarried when I was almost three years old. I have but one fleeting memory of that afternoon: a group of us under a huge shade tree in front of Grandpa’s farmhouse, outside Victor, in upstate New York. What I do remember, in much more vivid scraps, is a summer night outdoors at the same farm right around that time, a few glaring spotlights, clanging, laughing, and the smell of smoke. I remember it was a clam roast because it was the only clam roast my family has ever had. And because clams at a clam roast are incredibly delicious.
I knew my grandfather as a man of constants until he died at the age of 97. The only incident I ever saw him lose his temper over had to do with a game of gin rummy. He was incurably sociable, a Rotarian and Friday Fish-Fry guy, and incapable of traveling anywhere without running into someone who recognized his heavy-set frame topped with a Napa cap on his bald head. He was an eater, big hungry country boy division, who specialized in ice cream, fruit pies, and the type of doughnut called a fried cake. When Grandpa went to buy doughnuts in the morning, so the family catechism went, one dozen were for the family and one dozen were for Grandpa’s drive home in the truck.
5. Why is suicide being presented as a solution, rather than a problem, when the people involved have disabilities?
September is Suicide Awareness Month and September 10 is World Suicide Prevention Day. I’m writing this because media coverage over the past year alone seems to warrant an explicit reminder that:
- We don’t lack awareness of people with disabilities committing suicide; we do allow vulnerable people to feel shame over chronic pain and depression.
- Our suicides deserve prevention, not encouragement and cultural misrepresentation, as in films such as Me Before You.
What’s the context beyond the medical? What are the underlying attitudes guiding how the media’s coverage of people with disabilities who have committed suicide or who are planning to do so?
Was taking assistance from an aspiring sterilizer of the indigent morally acceptable? Was peeing on his shoes more embarrassing to her or him?
As the West-Hesperidan Free Clinic’s Administrative Manager, Gretchen had met their new neighbor, Randy, at a house party on Alamo Square one of their donors had thrown the year before. She had been new to representing the clinic at these things and wandered on the edges. The house had been a nightmare for her to get into, a mountain of boxy, tiled steps out front and an over-sized brass banister that was useless. An observant guest, a middle-aged woman, saw her hesitating on the sidewalk and offered an arm. She turned out to be a charge nurse at the university hospital who knew even better than Gretchen how to get a person up some stairs. Gretchen thanked her effusively and filed away the hand-on-elbow, lean-on-forearm technique.
Gretchen had been there for a very long hour when she started to need a bathroom. She asked a man standing alone near the front door who was staring into his glass if he knew where it was. He pointed to a line of people in the hall toward the kitchen.
“Only one,” he said. “I took care of things right away, myself.”
“Great, thanks so much,” Gretchen said, moving away.
He trailed after her, still eyeballing the bottom of his glass with its quarter inch of liquor. She attached herself to the bathroom queue and crossed her arms, resolutely facing away from him.
He — “They call me ‘Randy,'” — became quite chatty now that she had her back to him. Divorced, newly retired, just bought a house nearby. Fantastic investment except for the scum that came with it.
She turned around. “Scum?”
5. Because we need to support the decisions of overburdened parents/caregivers of severely disabled children right up until the time when their decisions require public funding for adequate and affordable in-home supports.
It’s feels like it’s 2007 all over again, what with “growth-attenuation therapy” for severely disabled children being back in the news. And today, just like then, people with disabilities are trying to make this all about them. But there’s no unrecognized ableism framing this “ethical debate.” It’s not as though fearful parents who really do care about their children — who really are severely disabled — are being given an absurd and brutal choice:
It is a truth universally acknowledged that a woman in possession of a neurodegenerative disease must be in want of an early death.
My dear Miss Cripple,
Madam, in vain I have struggled. It will not do. My feelings will not be repressed. You must allow me to tell you how ardently I pity you and plead you to accept my assistance in hastening your death.
“I’ve found that being inspirational is a lonely business and
unconnected to true efforts or achievements. Being a role model has the pleasure of an honor that’s earned.”
I was asked a few years ago about how I felt being called an “inspiration” based on my identity as a woman with a disability. This was my response, based on events over three decades in the workforce, the majority spent in progressive, community-based nonprofits in the Bay Area where the cross-disability community still remained invisible and therefore marginalized:
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 rights of people who are members of minority communities, survivors of violence and/conflict zones, and veterans; people who live with chronic ailments and have survived catastrophic illness, people who are young and old; male, female, and anywhere 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.
Far from protesting, many an Infirm Child’s eyes shine with an Inner Light at mention of this most noble purpose their otherwise wasted bodies can serve. There are Disabled Children not as wholly selfish as their Disabled brethren who would demand survival, even education and employment, at the expense of their Normal brothers. But good it is to look upon the Infirm Child going cheerfully to the cook-pot to feed the strength of the Normal Child whose rude health is testament to his good character and his Creator’s Pleasure in him.
UPDATE: (Salem Village, Massachussetts Bay Colony, January 18, 1617,) Goody DeVos, beloved of GOD as evidenced by her billions, testifying before Congress about the importance of parents being able to choose their disabled children’s schools without mentioning either that: 1) some parents would choose such things as a ducking stool to see if their child’s disability is a “real” one; or 2) choosing that charter dame school the next colony over means they lose their due process rights if the charter school beats their kid for not being able to read his horn book or whatever. Photo courtefy of Salon.
Nature and her master THE LORD have blessed the Educator with ease in beginning any recipe for inclusion, ‘Step One of How to Cook a Disabled Child: Catch a disabled child.’ Truly, the Infirm Child’s emfeeblement makes him an ideal choice for the inexperienced Educator new to his twin masters Efficiency and Economy.
When you have your specimen, consider your various cooking options as well as how many Normal Children you have to feed. Is the Infirm Child plump and well-larded? If this be the case, wrap the lad’s loin with the finest bacon and roast in a hot oven, a dish fit to serve at term’s end to celebrate the holiday.
San Francisco had recently become the first county in the country to officially give up on the idea of clean, accessible public bathrooms, available to all in need without regard to payment. The unpropertied in SF were just beginning to walk around with bulgy seats now that all General Assistance recipients were issued a box of generic diapers along with directions to the city shelters, a pamphlet explaining abstinence (UCSF had a grant pending to study the effect of Adult Diaper Dispensation (ADD) on homeless people’s adoption of condom use versus abstinence-only), and $6.95 to get them through the month. The Dignity concession was doing a brisk trade at Pier 39 for unprepared tourists on a budget; a one-day Fun-Pak went for 8.99 but did include two Maxi’s, a plastic Dungeness crab key-ring and a coupon for one Buena Vista Irish Coffee. Dignity Has Never Been So Disposable. A virgin diaper was going for five American Spirits on Sixth Street. The Sheriff’s Department had to fight for, but got, toilets in their renovated facility.
Bureaucrats who may or may not have been wearing a small pin on their lapels, a pin in the shape of a diaper, a stars-and-stripes-waving flag-type diaper almost wing-like from a distance, may or may not have attended a conference in the Caymans to sit in the louvered sunlight of a hotel’s banquet room, listening to presentations such as “Contained Defecation for the Economically Disenfranchised: A Cost-Benefit Analysis.” One of them may or may not have been on the board of a small clinic in San Francisco. None of the conference participants gave any thought to the number of cups of coffee s/he consumed. The conference center had plenty of restrooms. No extra charge. All fees underwritten by the Dignity Foundation, a charitable organization dedicated to community development, medical research, and K-12 education. Please take an annual report. Dignity Has Never Been So Within Our Reach. Earnest modern alchemy, how to make the base substance into cold cash. Magicians, start your engines.
Call, email, use social media to tell your Senators to vote NO on the AHCA:
Sample Script: “My name is ________________, and I’m calling to tell you that I oppose, and expect you to oppose, the American Health Care Act. We’re not going back to a pre – ACA era where insurers could ignore the needs of people with disabilities and pre – existing conditions and everyone was one medical emergency away from bankruptcy. If you value the health and well – being of your constituents, you must speak and vote against the AHCA.”
My name is Ingrid Tischer and I live in California.
My pre-existing condition is muscular dystrophy with chronic respiratory failure.
Without healthcare coverage for preexisting conditions, I wouldn’t have a machine called a Bi-PAP S/T and I would have died in my sleep a long time ago from carbon dioxide narcosis.
I wouldn’t have been able to keep walking for as long as I did because I wouldn’t have had orthotics.
I wouldn’t have been able to transition to a wheelchair when I finally needed to.
Because of this, I would tell my senators to vote NO on the AHCA and against any legislation that protects profits over people.
Including people with preexisting conditions.
Thank you, Rooted in Rights and National Council on Independent Living (NCIL)!
I was really excited about closing out Women’s History Month this year by developing and delivering an interactive workshop, “Building Your Organization’s Capacity to Ally With Girls Who Have Disabilities: Principles to Practices” for fellow (sister?) Alliance for Girls members, as part of my work at DREDF. (To the members who attended — you were GREAT participants!) Based on issues I’d recently written about, I wanted to call it “The Crip Sense or ‘I See Women and Girls With Disabilities. In Your Organizations.’” (Scroll down for 3 “posters” of workshop content.)
I said that part of having The Crip Sense is seeing things that are painful:
- Disability human and civil rights violations. Way too many of them.
- Violence against disabled children and adults – especially people of color (PoC) with invisible disabilities — even by caregivers, school personnel, and law enforcement officers, and that such violence at home, in school, and on the street is excused or rationalized.
- Girls who have internalized stigma that makes it feel “normal” to disown, downplay, or deny having a disability.
- Girls who hear – even from some disabled people – that “initiative” and “personal responsibility” can defeat systemic barriers born of — and well-maintained by — prejudice, and that they’ve failed if they’re defeated by rigged systems.
Why This Workshop, Why Now
In 2017, an inclusive movement includes cross-disability civil rights organizations, as a given.
From Ima Notkidding’s Powerful Testimony in Support of California’s Beginning of Life Option Act:
“She never wanted to live like that.“
“I’ll never forget what one of her doctors from one of those really horrible countries said to my sister, ‘It’s like you want what the women in my country already have, this ‘medical care’ that isn’t really medical care at all. How very strange.’ It IS really strange. We just want to not have what a lot of women in way poorer nations already don’t have and here we have to fight to not have it! …Fortunately, Choices & Compassion has been there for me and together we got my representative, Joe King, to sponsor a bill here in California that gives pregnant women the right to prescriptions that will hasten their births. To use when WE know it’s time. Just the knowledge that I’ve got the drugs should I want them gives me incredible peace of mind. And just the knowledge that he has no liability, no matter the outcome of my using his prescription to hasten my birth which no medical provider was required to attend, gives my doctor even more peace of mind.”
As of today, April 1, 2017, Tales From the Crip is proud to announce its full opposition to opposition to so-called “physician-assisted birth” that gives a woman who is suffering from pregnancy the right to birth naturally and when she is ready.
- We believe that physicians should be legally permitted to prescribe medication that will be self-administered to induce labor when a woman has been diagnosed as being within 6 months of birthing.
- We feel SUPER about a law that does not state that a prescribing doctor — or any medical personnel — attend a woman who has self-administered their prescribed drug to hasten birth.
- We feel super-DUPER about a law that shields prescribing physicians from…complicated outcomes of such births by lowering the acceptable practice standard to the “good faith” level. For just this one area of care.
for what a sailboat knows, running before the wind—"
Charles Harper Webb, Funktionslust
Alice was a tidy packer but there was no way she had fit all that into the one suitcase. Accepting the coffee her mother handed her, Gretchen waved off questions about her sore throat, eyes glued to the three objects lined up on the couch next to the sleeping Phoenicia. She rocked thoughtfully as Alice fretted about her being too ill for the clinic visit later in the day.
“Will you please relax, Mom? You’re looming. I’m fine.”
Alice tossed her the second gift, a dark blue paperback that landed on top of Dolly in Gretchen’s lap, making her gasp with laughter and ask, “Where did you find this?” But it was the third, the final gift, that made her sit back and say, “Oh good god.”
I represented DREDF in this conversation but it’s stirred up a big case of the feels about “choice” and being a liberal woman writer with a congenital disability, and the context this establishes for storytelling, and resisting and persisting. I continue, after 30 years of adult activism, to feel like I have an early shift of ableism — prepping the world to accept that I exist — while my nondisabled fellow human resisters and persisters get to sleep in. And if I weren’t white, conventionally educated, cis gendered, unthreateningly queer, and had all sorts of middle-class, married advantages, I’d probably never sleep at all. Image courtesy of the Disability Visibility Project.
Step 1: I Exist!
As many people who know me know — all too well — I’ve been writing a novel* for the past 400 years or so. The novel, The Cure for Gretchen Lowe, is the exploration of a what-if premise: What if a congenitally disabled woman were offered an experimental therapy that would cure her? The cure itself, Genetic Reparative Therapy (GRT), was never the point of the story because biomedical research, real or invented, never seemed like the most interesting part of the story. What I’ve been stuck on, like an oyster (or barnacle), since the idea first irritated my imagination was how I saw that my character’s situation began as a will-she-or-won’t-she question. From what I’ve observed in 50+ years of congenitally disabled life, that question isn’t typically a question to The Average Reader. “Well, of course a person like that would want GRT!”
I’ve considered that point of view quite a bit — 400 years allows for that — and much more seriously than I make it sound here. But that assumption also irritated me mightily: As a lifelong like-that-ter, I’ve run up against a lot of nonconsensual of-coursing when it comes to my bioethical choices. Simply opening my story — which I refer to as being “CripLit” — with a genuine choice, not a pro forma one, felt like I wrote in letters across the sky: I EXIST.