Subvert the Dominant Paradigm of Disability/Charity By Letting Me Match Your Monthly Gift for Those Meddling Advocates at DREDF!

 

Image description: An old-timey drawing from a scene in A Christmas Carol where Bob Cratchit is holding Tiny Tim on his shoulder, who is cheerfully waving his crutch.
My, uh, non-Dickens text is Bob saying, “DREDF’s advocacy means you just might get a frakking wheelchair–maybe even an education!” Tiny Tim says, “I told Scrooge to become a DREDF monthly donor or I’d haunt his ass!”
At the bottom: Dog bless DREDF’s donors – everyone!
Image Credit: Illustration by Fred Barnard

How I love crafting heartwarming holiday cards. Like Tiny Tim subverting the dominant paradigm of disability/charity.

You may not know this, but fundraising is a hotbed of subversion if you’re disabled (like me) and raising money to fight ableism instead of being used as an ableist prop by someone else.

You know what goes great with a paradigm shift? A new narrative.

One where disabled people lead the philanthropic work that affects them. As in:

You let me, a disabled donor, match your monthly gift that will support cross-disability civil and human rights defense led by disabled advocates at DREDF. If you take this action, you’ll be making a gift and helping make philanthropy more inclusive. So it is with real glee that I throw down this match offer to help support DREDF’s 40th year as our country’s leading cross-disability legal and policy defense fund:

If you become a DREDF monthly donor by 1/31/19, I will match your first $40. Ex.: If you give $20 per month, I will match the total of your first 2 months, or $40. 

I’ll know it’s a match gift because you’ll include “Nothing about Tiny Tim, without Tiny Tim” in the note field of your online gift.

You may know me as the Queen of Sardonica or as A Crip in Philanthropy but my days are spent fundraising at DREDF where I’m often serious for up to entire minutes at a time.

Our education rights work alone tells you why: “Dickensian” describes schools that lock disabled students in closets, hold them face-down in  4-point restraints, and fail to teach them how to read

Individual contributions are critical because both impact litigation and policy require a big investment of time and resources, and foundation funding for disability advocacy is scarce

I’m a DREDF major donor now because I have complete trust in the integrity, independence, and brilliance that the staff (who are not me) bring to disability civil and human rights advocacy.

If you know, like I do, that DREDF has made the world better than it was 40 years ago, please join me in giving a year-end gift. Share DREDF with someone you know. 

If a monthly thing isn’t for you right now, no problem. We appreciate every single gift that will fuel our 2019 work to defend those gains and – let’s hope – advance them over the next decades. Together!

THANK YOU AND HAPPY HOLIDAYS!

How to Do Inclusive Philanthropy: Introducing #DisabledInDevelopment

A Crip in PhilanthropyI’m a in grant-making ! Whoopee! As of November 1, I became a Trustee of Awesome Foundation’s Disability Chapter. It only took 25 years of being on the grant-seeking side of . I’d like to thank every teacher and boss who helped me with inaccessible toilets along the way.  You had my back when I was angry about something even I didn’t fully understand: I was up against a real thing – ableism – that created structural barriers to doing my job well.

And that brings me to: How to Do Inclusive Philanthropy.

Actually raising money, day in, day out, at DREDF doesn’t leave a whole lot of time for big-vision work. But I have one for inclusive philanthropy:

Philanthropy that has evolved from being the hothouse for benevolent ableism to a force for fighting all forms of ableism. Wash that charity right out of its hair.

I could spend months fine-tuning an inclusive philanthropy action plan but I’ve got a year-end campaign to run. So. Here are what 25 years of being disabled in development tell me are the ways to start scrubbing the charity model out of philanthropy:

1. Go inside out, bottom up.

Start by respecting the knowledge your current staff likely has, especially your front-line, support, and administrative staffs. 

The key: Lose your bias for titles and fancy degrees, and find out who in your organization has an interest in flexible schedules, paid family leave, and other such benefits. Why? Because disability, chronic illness, and aging may be driving that interest. Because they may feel they’ve been “special tracked” and blocked from moving up. That makes them more likely to have a vested interest in disability inclusion.

Why: Real change takes dogged persistence and these employees could well be your long-haul champions for transformative change.

2. Demonstrate that disability inclusion is not “the Other” in your philanthropic organization.

One of the most common misperceptions about disability is that it’s just not something your organization “does.” Fill out this simple “disability inventory” and you may well see disability is all around you, but called something else. 

Why: There absolutely will be folks in your philanthropic organization who believe disability = other people. They’ll be more receptive to the dogged persistence of your disability champions if it doesn’t mean “new stuff.”

3. Organize. Organize. Organize.

Help tell the real-life, true experiences of being disabled in development so that our invisible knowledge can help make glorious, ableism-ending change in philanthropy. Contact me if you’d like to be profiled (by name or anonymously) and featured in my new #DisabledInDevelopment series. I’ve got brief interviews with 3 amazing people — all women of color — in the works.

Compensation available because I don’t expect unpaid consulting from disabled people.

Why: So, so many people in philanthropy do not have the option of being out, safely, as disabled. #DisabledInDevelopment is intended both to help normalize disability in the sector and to provide an accessible platform for describing the structural discrimination they encounter and that all-too often halts career advancement or forces them out when they “hit the porcelain ceiling.”

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There’s No Cure for Gretchen Lowe: I Could Be Taken From You

There's No Cure for Gretchen Lowe
Gretchen Lowe, age 35 at the 90’s midpoint, was not dying, as she was at pains to point out more frequently than she would have wished. She had muscular dystrophy, a distinction often lost on those who equated strength with muscle mass, consciousness with cognition, and worth with productivity. A growing chorus assumed this would be her preference, death before disability, rather than the indignity of grappling with that terminal condition from which the chorus-members, themselves imperfect, suffered: life that is both enviable and bleak, and always, always unfair in distribution of the same.
Like so many of her friends, Gretchen had swapped one coast for the other after college and she left DC, a city of increasingly impossible winters, lawyers, and three years of an uninteresting technical proofreader job, and moved to San Francisco, a city of manageable weather, bike messengers instead of lawyers, and apparently no editorial jobs. Five years in, she was the administrative director of a small free clinic for women and had cycled through four shared flats before the Recluse, her boyfriend, gave up his Pacific Heights studio and moved in, more or less, to Gretchen’s two-bedroom flat on a quiet street in Cole Valley.
Like ancient Rome, San Francisco was a city of hills and, with few exceptions, honored its dead by housing them firmly and in perpetuity outside its official boundaries. Gretchen lived and worked firmly within those boundaries, mostly because taking public transportation to and from work everyday took what limited energy she had. She did have an increasingly hard time breathing and walking, her grip was undeniably poor, her fingers lacking in dexterity, but she had an even harder time imagining herself dead, or wanting to be dead.
But she had no master plan, no Disability for Dummies to be her guide, just a lifetime of experience in a body that was weak, breathless, and clumsy, and getting more so year by year. So Gretchen did what was practical and what made life – her life, none other’s – worth living. She kept to the flatter parts of town, used the bathroom before she left home and work, and thought more about her next meal than eternity. In this last concern she had the unwavering support of her family; Gretchen did know how to find a decent restaurant.
She needed this particular skill on this particular evening because her mother, Alice, had flown in. Festive feelings aside, Gretchen had serious misgivings to broach, misgivings that were about a clinical research opportunity that divided them called “Genetic Reparative Therapy.”
When Alice had first excitedly called her daughter months before about GRT, Gretchen couldn’t bring herself to say a hard, “No.” She herself didn’t know exactly why she was flat-out rejecting this “cure” — or why she couldn’t tell Alice no. She’d certainly done it before.
It wasn’t until she burst into tears after half-watching an old Sally Field movie about a mother not leaving her daughter that the feelings coalesced within her as a single as-yet-unspoken fear: “I could be taken from you and you would never get me back.”
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TryHarder™ Magazine: The Ally Issue

TryHarder™ Magazine: The Magazine for People Who Need to Try Harder, 2 cents

Issue No. 3: The Ally Issue

or You Can Lead a Nondisabled Ally to The Google But You Can’t Make Them Use a 100% Familiar Search Engine to Find Available Access Tools Themselves

In which Mx. Crip-Manners points out how good manners make good allies


“We’re super-excited you’ll connect us with disabled women for our project! We don’t know how to clean out a conference room though so can you take that on?” 

2 cents symbolYes, it really is that basic: You don’t invite other potential partners to muck out your space for the meeting or event because you know that’s your responsibility. But you expect your disabled invitees to either resolve your access barriers or teach you granular how-tos. I know this from decades in grassroots women’s organizations and philanthropy.
My considered position is the result of 20-plus years of waxy bummer build-up that comes from first being invited to be a partner or guest — and then being tasked with “the early shift of ableism” to clean up inaccessible messes.
Expecting this is just plain bad manners from you, otherwise decently-funded organizations, including foundations. Isolated requests for help, particularly under clearly difficult circumstances, are not the issue.

Did You Know?

Disabled people are not magical access specialists. We learned stuff. By learning. We are always learning new stuff. By learning. As Crip-Yoda says, “Learn you must.”  #CripTips


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There’s No Cure for Gretchen Lowe: Whoever Wrote the Regs Was a Frigging Genius

When the new Beetles came out, Gretchen had kicked around the idea of ditching all of the cab business and getting a car. Since cars came with lots of options but none that made the car driveable by her, she and the Recluse realized the car would have to be modified. Gretchen heard that lots of disabled people got financial help for such things through Voc-Rehab.


Look. You work. You’re not really eligible to be disabled. Air-quotes.


One sleepy post-lunch hour in her clinic office, she gave in to an impulse and looked up the number. When no one picked up at the main number, she worked her way through the extensions until a deep, annoyed voice said hello. That one call into the San Francisco office of Voc-Rehab pretty much cured any hope she had of even minimal financial assistance. The call also showed how employment was a universal solvent on the human stain of disability, at least where government agencies were concerned.

The counselor had more to say, nasally, on the overall lack of money available and went on to say that he himself was legally blind and had been waiting five years for a computer he could use. To do his job. Voc-rehabbing people who were legally blind, for example. So complaining to him was not really something he would be real open to hearing. If she didn’t mind.

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An Open Letter to Advocacy Funders: #FundDisAdvocacy Because Disability + Ableism = Structural Discrimination

 

Want in on the conversation about ableism? Check out what disabled advocates, civil and human rights activists, and philanthropic leaders had to say at the Twitter chat on 10/12/18 about philanthropy and inclusion. Then make your voice heard at #FundDisAdvocacy.


A Crip in PhilanthropyFoundation funding for disability advocacy dropped 23% between 2011-2015. Disabled people were the only group to see a decrease. Most funders are “aware” of disability but do they see ableism and structural discrimination? How do we make funders see disability civil and human rights as areas of actionable, urgent advocacy? A first step is recognizing disability as a constant but hidden set of variables in nearly all formulas for civil and human rights. 

I’m writing to you in my capacity as a community organizer – which is another name for a social justice fundraiser.
I believe you and I share common ground on the importance of advocacy:
We know that the great civil and human rights gains of the last century, envisioned and organized by the grassroots, were built to last through the courts and legislation, and they will continue to be the battlefields for preserving them.
I’m writing because disability civil and human rights advocacy is missing from your funding portfolios.
The first step in changing that is frank communication.

When you do not explicitly say “disability” in funding advocacy, you send a message to us: Deny, disown, and downplay your disability identity. That denies all marginalized communities access to our hard-won legal tools and, worse yet, our expertise in using them.


You may understand this letter, at first, as pertaining to a discrete group: disabled people. But it is a fundamental mistake to think that civil and human rights for any community can be fully achieved if we neglect, forget, or disregard such a basic human condition as disability and allow it to be the “natural” cause of poverty and abuse. If we are not safe or free to be vulnerable, then we cannot call ourselves safe or free. Our society is not safe or free.

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The NotPeople Magazine Cluelessest Man Alive Interview: Harper’s Rick MacArthur Gets Notpersonal With Janky Wheelchair About John Hockenberry, Disability, and #MeToo

"WE'RE NOT THAT SMART!" Katie Roiphe Begs Her Many Reader to Believe She's Not Colluding With John Hockenberry to Destroy Harper's; NotPeople; "Special" Crossover Issue With THE SIT-DOWN's Janky Wheelchair; Cluelessest Man Alive! RICK "NOT THE GENIUS" MACARTHUR; CRIPSPLAINS HOW WHEELCHAIRS PREVENT SEX HARASSMENT AND WHY DISABILITY + #METOO IS HI-LAR-I-OUS'; © 2018 talesfromthecrip.org

Photo courtesy Spectator

He strides into the cafe we’ve agreed to meet at. Leggy, silver-tressed, with creamy skin lightly dusted with freckles, Harper’s president and publisher Rick MacArthur is a knock-out at 62 even in the rumpled khakis that glide over his still-boyish hips. When he collapses into a chair, he lays a Trapper Keeper on the table, murmuring that it’s ten times better than that [bleeped] phone nonsense.

Announcing that this is his cheat day — “I learned recently this referred to food!” — he peruses the menu — “This menu’s paper quality is fantastic, isn’t it?” — before ordering a green juice, bananas Foster, and a double Scotch. He asks me when the guy who’s doing the interview is going to show. He is adorable. He asks again, using the words, “Chop chop.” He’s everything this interview said he’d be.

I’m still mesmerized by how stunning Rick MacArthur is, in person. The Author’s Guild photos don’t do him justice. I ask who dressed him for our interview and he gazes at me with fathomless confusion before laying his fingertips lightly on his shirt-front and saying, “I should know this! He’s worked for our family since before I was born. He’s going to be so mad at me. Not that he’ll ever express it.”


As the long-awaited second installment of Tales From the Crip’s series, Imaginary Interviews With People Who We Wish Were Imaginary, our new FuckAbility™ Research Council‘s Crip Carpet Correspondent, Janky Wheelchair, follows up on TryHarder™ Magazine’s recent take-down of John Hockenberry’s journaling essay, “Exile,” by devoting an entire episode of THE SIT-DOWN to publisher of the essay, Harper’s Rick MacArthur.
Photo of a janky wheelchair and text: The FuckAbility TM Research Council Presents The Sit-Down Hosted By Janky Wheelchair Copyright 2018 talesfromthecrip.org

Janky Wheelchair portrait courtesy of hiveminer.com/User/klickertrigger

The vivacious magnate talks nonstop about why paraplegics can’t sexually harass anyone; why he, a Francophile, is launching a Moi Aussi men’s movement to counter Me Too’s “Soviet-style” excesses; why paper is the future of Harper’s; and how everyone forgets how great John Hockenberry was in the film Coming Home. Keep reading for the unedited transcript of Janky Wheelchair’s exclusive hard-hitting interview with lively minx Rick MacArthur.

Flambee your bananas and keep the Scotch flowing because Harper’s RICK MACARTHUR is gracing the cover of NotPeople magazine as the CLUELESSEST MAN ALIVE! 


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TryHarder™ Magazine: The Takeaway on What I Learned From John Hockenberry’s #MeToo Essay, “Exile on Crip Street”

TryHarder™ Magazine: The Magazine for People Who Need to Try Harder, 2 cents

Issue No. 2: The Takeaway or Please, Take This Essay Away

In which The Crip shares 2¢ takeaways from John Hockenberry’s 7,000-word essay about the loss of a high-status career identity that was purchased and published by a pretty damn high-status periodical.


2 cents symbolTHE TAKEAWAY! Hockenberry says none of this is justification for offensive behavior toward women but it sure seems like he does:

“Being a misguided romantic, or being born at the wrong time, or taking the wrong cues from the sexual revolution of the Sixties, or having a disability that leaves one impotent at the age of nineteen—none of this is a justification for offensive behavior toward women. But is a life sentence of unemployment without possibility of furlough, the suffering of my children, and financial ruin an appropriate consequence? Does my being expunged from the profession in which I have worked for decades constitute a step on the road to true gender equality?”

2 cents symbolTHE TAKEAWAY!  Hockenberry thinks “unemployment” is the same thing as “not getting the same high-status work I once had and still want.”


Did You Know?

You may be working three jobs but those aren’t real jobs if they’re not prestigious. Take note of this, low-wage workers. #CripTips


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#WSPD2018: Suicide Is a Problem, Not a Solution for Living With a Disability. Yup, Even One That’s Neuromuscular, Progressive, and Degenerative

2018 UPDATE: STILL ALIVE

STILL OPPOSED TO EUPHEMIZING DISABLED PEOPLE BY NORMALIZING OUR SUICIDES THROUGH LANGUAGE

I’m still disabled, still degenerating, and still filled with joie de crip, but even if I weren’t, I still wouldn’t be buying the double-speak that calls my suicide “a rational choice,” “death with dignity,” and “ending my life on my own terms,” while a (seemingly) nondisabled person’s suicide is “a public health problem.”

The terms we use in talking about an issue set the terms of the debate. Suicide is a public health problem. Distorting that through sophistry marketing language feeds suicide contagion.


September 10 is World Suicide Prevention Day. But for a disabled person like me, it’s just not my day. Literally.

Increasingly:

What would be a “threat of self-harm” for you, is a “personal choice” for me.

What calls for an intervention for you, calls for a pre-suicide party for me.

Your movie is It’s a Wonderful Life. My movie is It’s a Wonderful Death.

When it comes to people like me, suicide is rapidly becoming normalized. Or more exactly, suicide is being erased through re-branding. “It’s not ‘suicide’! It’s ‘ending your life on your own terms’!”

But I want a great pre-end of life. I want to live on my own terms.Ingrid posing with her Respironics Bi-Pap S/T

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Dr. Nutone Reveals the Secret of Transcendental Misanthropy

There's No Cure for Gretchen Lowe
“I’ve given a lot of thought to how Transcendental Misanthropy relates to conventional medicine. Of course it has a lot to do with intention. If your doctor prescribes an anti-depressant that gives you side effects that are about as debilitating as your depression, does that make your doctor a practitioner of Transcendental Misanthropy? Has your doctor embraced the essential paradox that pain relieves – increases, paradoxically – pain? The simple use of ‘side effects’ and ‘mild discomfort’ to describe loss of sexual function, insomnia and in the case of weight-loss treatments, bowel control, inspires my respect, I have to tell you.  Language is really something.

“I began to wonder why Max and Emma were considered lesser beings than my colleagues in the department, particularly the older ones and the guy with the hearing aid. I began to resent the condescending questions about my ‘pets.’ One day at a faculty senate meeting, I had my awakening. Max and Emma’s consciousnesses were equal to that of my human colleagues. In some cases superior. They had, after all, achieved for themselves lives we might envy in their ease and comfort. What they lacked was respect from others. What they lacked were their rights.”


“As our Eastern brothers have taught us, though failed to incorporate into a saleable product — although certain towns as Sedona, much of western Colorado, and just about all the Open Access workshop catalog, contradict this failure — attention is critical to our well-being. Or in this case our suffering. Escalation, escalation, escalation — escalating torment until it becomes unbearable is the way.
“You can’t do this without paying a whole lot of attention to what irritates you, what hurts your feelings. How you do it is up to you. I’ve known spiritual seekers in Marin who broke down in tears because their robes weren’t made of the right cotton. Seen fruitarians come to blows with botanists who tell them they’re actually eating vegetables.

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Letters to a Young Fundraiser: The Philanthropeon Wars and the Fall of Telethonika

My Dear Friend:

You wrote of a growing strain on your spirit that seems to have no reasonable source, as your position is unobjectionable, your master provides you accommodations enough, and your annual fundraising goal numbers not unduly burdensome. What then?
You ask if you are perhaps “a loser.” I think not.
During my youth, my father — a fundraising titan who fought for funding alongside Major Donor — became disgusted with my inadequate Girl Scout cookie sales and sent me away to a notorious fundraising academy, one of the very strictest of the Transactional schools.
I was miserable and branded a failure — a loser — at “working the room,” and “friend-raising,” and so on, until I was confined to the barracks for insubordination after I refused to ply my trade at a memorial service, trading donations for signatures in the guest book.
But then I took a History of Fundraising in Western Civilization class. I learned about the Philanthropeon Wars.
I learned about the lost city-state of Telethonika, where disability democracy had been born around the year 504 BC. It is a loss that echoes down through millennia through some fundraisers who have the disability consciousness and who feel the shadow each year as Labor Day approaches. You may be feeling the echo of the fall of Telethonika, that flattish plain located one mountain over from Sparta.

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A Crip in Philanthropy: The Best of Times, the Worst of Times

The Best of Times, the Worst of Times: This Moment in Disability, Dignity, and Human Rights

A Crip in PhilanthropyAn earlier version of these remarks was shared at Congregation Beth Jacob in Redwood City, California on March 3, 2018. I deeply appreciated their welcome when I was invited to address their community by Anne Cohen, an activist, disabled parent, and board member at the organization where I am Director of Development, Disability Rights Education & Defense Fund (DREDF) or, as Anne has dubbed it, “the ACLU of disability rights.” CBJ’s cross-disability access allowed me to take the first step in organizing community support: communicate.
I grew up with a disability, one that is genetic. I have been a plaintiff in an ADA access case here in California. It involved a bathroom. That required a lot of talking publicly about my using the bathroom. For disabled people like me – physically disabled — being disabled means never knowing where your next accessible public bathroom is. Today. Nearly thirty years after the ADA was passed. And keep in mind those 30 years coincide with my fundraising career in social justice non-profits and their philanthropic allies. Those are whole decades of trying my best to use empathy and imagination to shift that stubborn disability narrative that says I receive but can’t give. That disability is a health thing. That I need a cure when a toilet would be preferable. That I am charity, personified, not justice, denied.

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There’s No Cure for Gretchen Lowe: A Mother’s Day Card From Alice

Another Excerpt from: There's No Cure for Gretchen Lowe, a novelAlice’s schoolteacher handwriting greeted Gretchen when she flipped through the mail that evening. It was a floridly pious Mother’s Day card with a letter enclosed. Her mother must have sent it right after Gretchen had called about the board meeting fiasco. Oh Alice, Gretchen snorted pleasurably. I couldn’t have picked a better card myself.

Underneath the card’s summary appreciation for maternal sacrifices, physical and emotional, Alice had written, “Thought you might like to see the enclosed item right now. I think it confirms that we are related. I cannot take credit for why you are who you are but I did have a hand in it. Then again, you were always a rotten child. Not that I had anything to do with that. Love, Mom.
The letter was her mother’s same handwriting.  Cheered, Gretchen set to reading it. It was dated from May 1970 and addressed to a Desmond Wallace, Chair of Fundraising Operations for the National Cerebral Palsy Association. Oh dear.

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I Want to Be Envied

I aim way too low.
I realized this after Congress voted this week to deny me the pleasure of peeing like non-disabled people do, which is to say, without having to do any kind of math, scheduling, or general advance planning when going out to public places.
But by being denied the minimum, I’ve learned to want everything.
You know what would be great? If I could be envied by non-disabled people.
Yes – envy’s bad! I shouldn’t want to be envied. I should want inclusion. Justice. Equality. I should want respect, love, acceptance.
Of course I want all that. But I want more.
I want to be envied by non-disabled people. Not admired. Envied.
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Top 10 Reasons Why Focusing on White Students With Disabilities Is Not Acceptable Policy Strategy. In DC or Anywhere.

Lisa Simpson throwing up her hands in horror

I used this very same image for another post and darned if it isn’t perfect for this one, too! Courtesy Fox.

10. Because it’s racist. (In a rush? You can stop here!)
9. Because education policy is entwined with juvenile justice and incarceration policies for students of color with disabilities and, funny thing, disabled advocates of color think those issues are kind of urgent.
8. Because we lack the nanotechnology to measure the moral integrity of erasing students of color with disabilities from the very issue that derails and destroys their lives in vastly disproportionate numbers.
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Your 3-Point Take-Down of the ADA Education and Reform Act of 2017, or Why Your Representative Should Vote NO on HR 620

Here’s how to tell your Congressional Representative to OPPOSE H.R. 620, and any other bill that weakens the ADA! 

Here’s your 3-point take-down of the central flaw in HR 620:

Point #1: HR 620 claims the ADA is so easy that a random person should carry the responsibility for teaching corporations how to obey the ADA, aka civil rights law.

Color still from Saturday Night Live. A parody commercial for Shimmer Floor Wax. Chevy Chase is spraying Shimmer on Dan Ackroyd's pudding while Gilda Radner looks at the Shimmer on her mop.

“HR 620 is BOTH!” Courtesy NBC Universal.

Point #2: HR 620 claims the same ADA is too hard for corporations to learn how to obey.

Point #3: HR 620’s claim to be both a floor-wax AND a dessert topping isn’t reality-based.

Failing the reality test makes HR 620 a NO vote

Tell your Representative to vote NO on HR 620 because even when a corporation is suffering from the heartbreak of toohardism, sabotaging the civil rights of people with disabilities goes well beyond a corporation’s demand for reasonable accommodation.

BONUS POINT: Ignorance of the law is NOT an excuse, so why does HR 620 make it okay for corporations to NOT obey the law because they don’t understand the ADA after 27 years?

You want more on why HR 620 is a hot mess? Here you go.

This #Crip Stays in the Picture: A Past Plaintiff on Opposing H.R. 620, the #ADA Notification Act

Colorful cartoonized portrait of Ingrid Tischer's face

This crip is staying the picture of ADA litigation.

I’m Ingrid Tischer. You may remember me as “headless female torso using a walker” from Anderson Cooper’s “ADA Hit-Piece of Horror” on 60 Minutes. But I’m here today to tell you about a different type of horror: Being a plaintiff in an Americans with Disabilities Act (ADA) lawsuit, in which you’re presumed greedy and where whatever happened to you was no more than an inconvenience.

Four years ago, I began a multi-year metamorphosis into “non-vexatious litigant wanting to use a toilet.” That makes me the face of ADA lawsuits. But, in the 60 Minutes segment and the continuing slew of hand-wringing pieces about ADA scam-artists, you don’t see any faces like mine. A face like mine disrupts the narrative of the selfish — or gullible — cripple who financially kneecaps overwhelmed small business owners over access technicalities. You don’t hear much about how the proposed H.R. 620 would also apply to our considerably larger corporate citizens. So I’m putting my face right out there. This crip stays in the picture.

Despite the media’s fixation on “drive-by litigation,” — a completely non-accidental choice of phrase that associates fighting for my civil rights with gang violence – I was using the ADA as it was intended to be used, and should be used. As a civil rights law that, in 1990, made me a full US citizen at the age of 25. But in addition to the external changes in public spaces that have literally opened doors for me, the ADA is responsible for a profound internal shift in my thinking: I have expectations now that I didn’t grow up with: that I can enter a store, eat at a restaurant, cross a city street, open my office door.

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The Crip Sense: “I See Women and Girls With Disabilities. In Your Organizations.”

In my particular line of work — fundraising — I have the “challenge” of making the case for funding cross-disability civil rights work from institutional funders who are still predominately stuck in the disability = tragedy trope.
I need allies from outside the cross-disability communities because that’s how philanthropy — and everything else — works: it’s who you have relationships with, who you can ask for help, give help to.

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.

Color photo of a fortune cookie that reads,

Why This Workshop, Why Now

In 2017, an inclusive movement includes cross-disability civil rights organizations, as a given.

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Before I Resist and Persist, I Must Exist: Bioethical Choice, Living “Like That,” and Working the Early Shift of Cleaning Up Ableist Narratives

filmdis-feb-18-1I 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.

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RespectAbility, Class and Race Privilege, and Leveling the Erring Field

Translation: “Giving money is a transactional arrangement for me; it’s either outright proof that I’m a good person or at least suitable cover when my behavior is criticized as racist.”

You can’t buy back respect. That’s not philanthropy.

Not even when you’ve laid claim to the word “respect” in the name of your organization. This is one place where class privilege hopes so very much to neutralize racism.
 The post shows a picture of George H. W. Bush and links to a news story of him saying he will vote for Clinton. Mizrahi wrote: If Hillary wins it will because of white voters who care about people with disabilities. BTW, this is NOT a partisan thing. The same is true of Republican Sen. Richard Burr in NC who is running as the pro-PwDs candidate there.. THE POWER OF VOTERS WITH DISABILITIES WILL DETERMINE THE OUTCOME OF THE 2016 ELECTION! Remember that George H.W. Bush signed the ADA!

Screenshot of Mizrahi’s September 2016 Facebook post.

I have now been witness to The Mistake by RespectAbility’s President, Jennifer Laszlo Mizrahi; the unpleased reactions by disabled women of color; some thoughtful initial responses; a cringe-worthy apology-type product; the official statement; and now (I’m guessing), The Great Moving On from uncomfortable conversations about ableism,  racism and disabled people of color within the disability rights community.

Part of me — the part that’s still polite to boundary-busting missionaries — initially wanted to say, “I’ve done this kind of racist shit myself. Sadly.” Then I remembered that much of that shit was when I was near the start of my career 25 years ago. When I would have lost my job — and Bi-Pap-providing health insurance — if I kept that shit up in our very progressive free clinic for gyn care. And how I had no safety net if I lost that job.

Everyone makes mistakes but the erring field is far from equal.

Depending on your class, Repercussions, Consequences, & Accountability are either the Three Furies that dog you even when you haven’t screwed up, or they’re the crisis PR firm you consider for damage control.

When you’re poor, unemployed, a woman, a person of color, a disabled person, or all or most of the above, making mistakes is far more likely to lead to words like “unqualified.” You are threatened with unemployment, fired, and/or are cut off from public benefits. In the worst case scenario, you haven’t made a mistake at all but are questioned, blamed, violated, beaten, shot, killed for being the person you are in public, in school, on the road, and at home.

When you’re affluent or “comfortable,” employed, a man, white, not disabled, or all or most of the above, making mistakes is more likely to lead to words like “executive coaching,” and “Let’s bring our communications person in to help.” In the worst case scenario, you “transition out” to what is often a better-paid job, aka “failing up.” If you are in a position to be a volunteer who has significant authority, the usual checks and balances on your behavior can be even weaker.

That’s when I first realized how integral money, class privilege, and power are to this recent incident. I haven’t seen any real repercussions, consequences, or accountability for Mizrahi — except for a bump to her prestige — and that’s just one infuriating aspect of how race and class insulate those with power.


Then I reread the official statement and I hit a whole new level of disturbed. Continue reading

#WSPD2016: Suicide Is a Problem, Not a Solution for Living With a Disability. Yup, Even One That’s Neuromuscular, Progressive, and Degenerative

September 10 is World Suicide Prevention Day. But for a disabled person like me,  it’s just not my day.

Increasingly:

What would be a “threat of self-harm” for you, is a “personal choice” for me.

What calls for an intervention for you, calls for a pre-suicide party for me.

Your movie is It’s a Wonderful Life. My movie is It’s a Wonderful Death.

When it comes to people like me, suicide is rapidly becoming normalized. Or more exactly, suicide is being erased through re-branding. “It’s not ‘suicide’! It’s ‘ending your life on your own terms’!”

But I want a great pre-end of life. I want to live on my own terms.Ingrid posing with her Respironics Bi-Pap S/T

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#CripTheVote: You Have Hillary Clinton to Blame for This Blog Post

For the first time in my 50 years on July 28, 2016, I heard my disabled childhood described through the civil rights lens by a presidential candidate, Hillary Clinton. She centered my childhood where I would have: on education and public schools.

It’s difficult to explain the magnitude of hearing my disability identity described in the language of equal rights and not special needs. As meaningful as it was to see a woman accepting the nomination, the tectonic shift I felt was in Clinton accepting me as I am: as a person who deserves respect and can serve the greater good. Not as a diagnosis who has nothing to give or a vote to cast. Certainly not as a target to mock whose vote is irrelevant. Because I have gained my right to an education, I gladly accept the responsibility that comes with answering these two questions:
What do I want to contribute to that is bigger than myself? What is it that I have to contribute?
In using the education that Hillary Clinton and other disability rights advocates fought for, I have a shot at becoming a role model who works together with others rather than being labeled an “inspiration” who is kept at a distance.
The story of childhood is the story of education. The access to and quality of education determines whether that story is one you want to retell over and over, or one that threatens to scare you into silence. The school-to-prison pipeline and the violence that students of color with disabilities experience in the name of “discipline” are the education issues that need urgent action today. I appreciate Clinton’s past work because I see potential in it for protecting the rights of more children and youth with disabilities.
B/w photo of a little boy and younger girl sitting. Both smile and the boy is giving the girl a mischievous sideways glance.

The author and her older brother. Hillary Clinton said, “Every kid with a disability has the right to go to school.” That was an idea – not the law – in 1967 when this photo was taken. Three years later, this little girl could not start first grade at the neighborhood school where her older brother went. The school had a pet rabbit named Pugsly. Inclusion: DENIED. An education: DENIED. A bunny to pet: DENIED.

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Dignity Has Never Been So Disposable

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.

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HOCAS-NOCAS: Making Restaurant Magic Happen — Or Not: San Francisco, 2003

Photo of 2 blue and white dinner plates. Text: I'M NOT FINISHED, a personal encyclopedia gluttonica by Ingrid Tischer talesfromthecrip.org

Image courtesy eBay

Originally published in The Daily Gullet at eGullet.com in 2003

CLASS. SOPHISTICATION. Applied with sincerity to a restaurant that
takes pride in hospitality, these words make service charming rather
than servile.
Dropped like banana peels on the floor of a restaurant that feeds ’em and shoves ’em out the door, they’re ironically hilarious.
Whatever tone they have, though, Class and Sophistication are not about anything as discrete as the cost or scarcity of the ingredients a restaurant uses. Class and Sophistication are all about attitude.
Checking out a restaurant’s attitude starts with two questions: Do they want me to come into their restaurant? If so, what are the signs?

All was well, right? A grown man got a balloon, two people had a
chance encounter just off the highway, and I had a BLT. Well, no.
Don’t ever discount the flying monkeys. They must have made quick work of attractive bus-person because he returned moments later and said he had to repo the balloon. Painfully embarrassed, he apologized for letting “them” know it wasn’t really my friend’s birthday. There was an awkward silence as he untied the disgraced inflatable from my friend’s chair.


A few examples point out how a restaurant can zoom to the Height of
Class and Sophistication (HOCAS), or sink to the Nadir of Class and
Sophistication (NOCAS).
A HOCAS restaurant can be a mom-and-pop that sends out a glass of wine on your birthday, or a mid-price place that always deals graciously with that member of your party who wants everything “on the side” — and gets the order right. A HOCAS does everything within its powers to please. It’s smart to do so because every restaurant makes mistakes.

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