I am eight. I am waiting alone for the little bus inside the doors of my school, White Sulphur Springs Elementary, in the Catskills. I glimpse a small girl not far away – tired, leaning against the wall like it was holding her up. Seeing her, I feel a sorrow for her. The sorrow is bigger than me, it blooms out of my stomach and swallows me whole like a monstrous flower. In the next instant, I see that I’m looking at myself in the reflection of a display cabinet’s glass doors. I am angry at myself – first, for letting myself look like that – then, for looking like that. Then I know that I will never be faster than seeing is. It can get even me. This means that while I’ll empathize with strangers who feel sorry for me in decades to come – having done it myself – I’ll want them to snap out of it, too – as I did.
I’ve been the only (identified) disabled student in my classes in five schools since first grade, I see children “like me” at this clinic and on tv once a year during a telethon that makes me cringe. That’s it. I have a pronounced lack of images to work with and an inability to decipher the ones I do see.
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!
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.
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
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.