TryHarder™ Magazine: The Disability Etiquette Issue Featuring the Dowager Crippess From Downwith Ableism

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

Issue No. 5: The Disability Etiquette Issue

In which Mx. Crip-Manners is most grateful for any etiquette-related #CripTips the Dowager Crippess of Downwith Ableism might care to offer

Gif from Downton Abbey of the Dowager Countess in full evening regalia, stamping her cane for emphasis.

“My dear, if punctuality is the courtesy of kings, then access is the etiquette of ableds.”


 What is a ‘forgetting of the access’?

2 cents symbolEtiquette is so inextricably bound to access that I cannot countenance this notion of ‘disability etiquette’. Disabled people do not require ‘special’ manners.
There is nothing remarkable about courtesy, except regarding the lack of it many disabled people encounter. I have never understood how any well-intentioned host could ‘forget’ to offer a navigable entrance to guests.  We do not ‘forget’ to offer our guests chairs, for example, do we? Why, imagine it – it would be like one of those exceedingly tedious ‘cocktail’ parties where one is forced to stand as if one is in the court of Louis XIV. 

Continue reading

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.”
Continue reading

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: Do you invite abled guests to muck out your space for your shared meeting or event? I’m guessing you don’t. You consider your space to be your responsibility.  Just as I, a wheelchair user, don’t expect my walking guests to bring their own chairs. 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.
That’s not okay.
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


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

There’s No Cure for Gretchen Lowe: The Dignity Initiative

Another Excerpt From There's No Cure for Gretchen Lowe a novelAnd 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?”

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