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!

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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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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There’s No Cure for Gretchen Lowe: The List of Lives That Suck

“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.”
Silence.
“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.”

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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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