“I’m not really looking to change, Mom.”
“Your life could be easier if you didn’t have muscular dystrophy. What I would have given for this Genetic Reparative Therapy when you were little.”
Gretchen poured water in the coffee maker. “Yeah, I’m well aware that there’s a list out there of Lives That Suck and — of course! — my name is on it.”
Alice continued. “I can’t believe you would even consider not being part of this study.”
“Well, jeez, Mom, I have to consider not doing it.” Gretchen leaned against the counter. The machine hissed and steamed. “Remember when they wanted to fix my foot and didn’t mention they’d be removing half of it? Good thing we pressed for details on that one.”
“I have to live with the results of this experiment – I will be the result of this experiment. And I gotta tell you – just because something can be done is not necessarily a good enough reason to do it.”
Issue No. 1: Ableism Speaks
In which The Crip gives very special ableist remarks the 2¢ they deserve
“If you’ve got your health, you’ve got everything.”
Sure, health is important but if you’ve always lived with a chronic condition and/or a progressively degenerative one like I have, hearing this most common of platitudes leads to a waxy bummer build-up in the psyche. It is no pleasure to ponder the possibility that you regard me as having…nothing. Nor do I want to reprise my role on Emotional Labor: Special Cripple Unit where I tell myself you don’t actually mean that. I would prefer instead that people express gratitude for what health they have (I know health is a nice thing!) without making such a sweeping generalization about what a good quality of life requires.
Did You Know?
A disability does not necessarily mean “sick.” Unless you mean, “sick of discrimination.” Then — oh yeah. #CripTips
The Best of Times, the Worst of Times: This Moment in Disability, Dignity, and Human Rights
An 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.
And she had made sure the door was locked. She stood there, watching the gray-blue paint and listening to what was happening from within. At first, nothing. Then a murmuring confusion, then a rapid rise in decibel levels, quickly becoming Frank’s singular baritone summoning Gretchen. It didn’t occur to anyone that it was anything but an accident.
She waited and then knocked to get their attention.
“Hi!” she called. She had to knock harder because, as usual, they were still talking. “Hi, everybody! Are you ready to start the meeting?”
Alice’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.
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.
In a hurry to contact California co-sponsors to say #HandsOffTheADA? DREDF has contact info and scripts.
“Where, after all, do universal human disability rights begin? In too-small bathrooms, of necessity close to home – so close and so small that they still cannot be seen on any radar of Rep. Speier and way too many California representatives.”
It is profoundly demoralizing that Rep. Speier and other California members of Congress are cosponsoring
Imagine that you have a harasser. Imagine that never know whether he will block you from getting into the public bathroom you need — sometimes pretty badly! — or not.
Imagine hearing that your harasser deserves 6 months to make “reasonable progress” toward not-harassing you — as much. After you wait 6 months, maybe you’ll be allowed to say NO to your harasser. Maybe.
Imagine your Representative is championing your harasser’s excuse that it’s really hard to not harass you: “You have to understand that, yes, he knows what he’s doing has been against the law for almost 30 years but he needs more education.”
Access to a toilet is about dignity and safety whether the barrier is a harasser or a narrow door.
The ADA has been the law of the land for nearly 30 years and the only “reform” it needs is significantly greater enforcement. Disabled people in 2018 still can’t count on something as basic as a toilet in public spaces. If you don’t think there’s a cumulative effect of never knowing where your next pee can actually take place, you try holding it through 30 years of work-related business trips, restaurant meals, and meetings. Continue reading
I live in an unusual household: Hale Zukas is a household name in it. But that’s what happens when your spouse not only knows his disability history but many of its people (like Hale), and you happen to work with another transportation powerhouse.
Fortunately, filmmaker Brad Bailey has made an award-winning documentary profiling this low-profile disability policy pioneer, team player, and organizer for the 504 sit-in protest. But make no mistake — Hale’s low-profile comes from staying immersed in the details of policy and regulatory work. He has been — and this is key — a dreaded name by anyone who opposed accessible transit. For certain officials, there have long been six words they just don’t want to hear in connection to public accommodations: “Hale Zukas is on the line.”
BAMPFA included “Hale” in its “Visualizing the World” series last night on 1/22. I had been planning to see it but could not — and I missed a strangely satisfying opportunity to celebrate Hale Zukas on the eve of Ed Roberts Day — pre-gaming it, so to speak. Ed Roberts is often mistakenly credited with co-founding the original-flavor Center for Independent Living (CIL), but Hale really is a co-founder. He got there first. Brad Bailey describes him as a workhorse of the disability rights movement. See the film and see why for yourself.
Rumor has it the film will be show again in Berkeley again in February. I plan to be there.
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.
are were a number of Democrats in Congress who are still not grokking that their vote voting for H.R. 620, the ADA Notification Act, is a vote against civil rights and disabled Americans, I’m going to show this absurd bill in action against real Americans.
By showing it in action against those really-real Americans, The Simpsons.
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.
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.
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.
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.
Why This Workshop, Why Now
In 2017, an inclusive movement includes cross-disability civil rights organizations, as a given.
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.
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.
September 10 is World Suicide Prevention Day. But for a disabled person like me, it’s just not my day.
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’!”
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:
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.
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.
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.
Matt Damon, MD (Master of Diversity) Hails Diversity in Film; Would Probably Remember to Include Disability Diversity if Prompted. Diversity.
Tonight, in beautiful downtown Switzerland — the Alps of the louge of suicide, home of the valley of the shadow of dignity, where the hills aren’t really all that alive — the FuckAbility™ Research Council is presenting its coveted Palme d’Visage award for the most condescending portrayal of disability in film.
This year’s nominees amazed us with their ability to FINALLY include disabled characters who fucked in groups of one or more. But, as can so often happen after such sexy-times, we were left in the dark saying to some character we barely knew, “That’s it? Seriously? OK, you know what? Please go.”
And here are our nominees:
The Shape of Water, originally titled Children of a Lesser Black Lagoon, is about a lowly, lovely woman with no voice who is drawn into an inexplicable relationship with a sea-goblin that everyone is fascinated yet repelled by…but we’re not seeing how this is anything but an embarrassing obvious Weinsteinian fantasy wank.
Breathe is nominated, a film that our UK correspondent, The DisHon. Hilaria Mirth-Sitwell, gave one middle-finger up out of a possible two, because of the “twist” in which our hero decides to kill himself. It reminded us that the only thing more durable than the medical equipment he helped pioneer is the stigma of being dependent on another person.
Now this one is a shame, because Please Stand By‘s director, Ben Lewin, made the very down-to-earth fucking-while-disabled movie The Sessions, and as an openly disabled man, is aware of both disability culture and politics. Would that his earlier directness about interior character shaping responses to living with a disability had dropped by the set of Please Stand By. Because all we got here was a collection of external behaviors in search of a character, all stuck in a script full of strange contradictions and cliches. And there’s a screenplay. So. Was this some hackish meta-comment on how quirky and awkward screenplay-writers are, in general? We may never know. It’s an ouro-bouros of tropes. We do know this movie prompted a great idea for somebody’s future disability studies thesis: “The Role of Random Television References in Portrayals of Characters With Unspecified Neuroatypical Conditions-Slash-Identities: Being There, Rain Man, Please Stand By.”
Christ, this is tiring.
Our final nominee has been roundly criticized for its casting of sighted actors in a movie about blind characters. Ordinarily, we would be outraged, too. But the entire concept for this film is such a piece of shit, it’s hard to care. It began as a flawed pitch complete with a meet-crip — When Mr. Magoo Met Sally — then appears to have struck a highly lucrative deal with The Sunglass Hut that opened the door to Named Unblind Talent, i.e., Alec Baldwin and Demi Moore, and the film’s death spiral began before crashing clumsily into theaters like someone’s stereotypical picture of someone who is Blind.
And the most condescending portrayal of disability in film and winner of this year’s Palme d’ Visage goes to…
Not only for the aforementioned casting half-assery but for outstanding condescension in its very bones.
We bestow the Palme d’Visage on the Blind producers who couldn’t see the giant, flashing problems with their movie about being blind.
This is baked-in, reduce to a glaze, from-scratch condescension, folks. From it’s one-word title — we fucking HATE the phoned-in pretentiousness of one-word titles — that all-too-accurately signals that the movie will be about Doing Stuff While Blind. And not really interesting or terribly real stuff. Walking while blind! Using a white cane while blind! Wearing a blazer while blind! Getting read to while blind! Talking huskily about loss while blind! Because that’s what being blind is. It’s being blind. Being blind all the time. So very, very, very blind. Blind.
And, no, we never actually saw Blind. We figured if the producers could make a movie about people they haven’t seen, why did we need to see a movie before judging it?