I Remember This: The Girls With the Black Bars Over Their Faces

2 side by sde b/w photos of a young white woman wearing only a Milwaukee back brace, with black bars covering her eyes and breasts. On the left is her back, on the right, she's in profile.

Source: researchgate.net: (Reprinted from Blount WP, Schmidt AC, Bidwell RG. Making the Milwaukee brace. J Bone Joint Surg Am. 1958;40:526–528 with permission from Journal of Bone and Joint Surgery, Inc., Needham, MA.)


1977. I am 11 years old. I am half-naked in a crowded hospital hallway.

I’ve gotten ten steps down the hall from the exam room where my mother is waiting before I fully appreciate that my fish-white thighs are fully on display.
My thighs are doing their best to walk the rest of me onward. The rest of me is wearing underpants, an all-too-sheer white t-shirt, and a Milwaukee back-brace.
The words, You are half-naked in public, explode in my mind like a bad-dream bomb.
Continue reading

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.

Continue reading

Disabled People Have Waited 30 Years to #PeeToo: Protect the ADA and Tell Congress to Vote NO on HR 620

In a hurry to contact California co-sponsors to say #HandsOffTheADA? DREDF has contact info and scripts.

THE ADA PASSED IN 1990. DISABLED PEOPLE STILL DO PEE MATH IN 2018. THAT ADDS UP TO INJUSTICE. TOILET ACCESS DELAYED IS TOILET ACCESS DENIED CONTACT YOUR REPRESENTATIVE BEFORE THEY VOTE THE WEEK OF FEB. 12: SAY VOTE NO ON #HR620, THE ADA EDUCATION AND “REFORM” ACT OF 2017 IF YOU DON’T GET WHY WE’RE TAKING ACTION TO STALL HR 620 YOU TRY HOLDING IT FOR 30 YEARS DREDF.ORG/HR620/


“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

D’Oh! Undermining the ADA Will Hurt Ordinary Americans

Since there 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.
Lisa Simpson throwing up her hands in horror

“WHAT??? Democrat Representative Jackie Speier co-sponsored H.R. 620, the ADA Notification Act, that undermines vital civil rights protections for millions of disabled Americans?! HOW DID WAL-MART GET TO YOU, JACKIE???”?

Continue reading

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.