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.
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 am so, so lucky to have known Ursula Le Guin at all, let alone to have had that brief time take place at Flight of the Mind writing workshops, where she taught, talked, argued, drummed (on the night of the summer solstice, no less) and listened deeply to every woman reading their work in front of the big stone fireplace. Maybe it’s the deep green leaves along the McKenzie River in Oregon but, in my mind’s eye, I see her standing under trees. Well, she was like a great big tree. She was THERE.
I have a memory that I almost didn’t include here because it seemed so small. But I realized it wasn’t small to me. I’ve kept it for 20 years. I had mentioned to Ursula that I couldn’t figure out what it was I was working on but I didn’t think of it as science fiction — like her work. That got me The Eye and a peppery remark that she didn’t like labels. I was writing? Good. Keep doing it. After I read the I-don’t-know-what-this story in the evening to our little community, Ursula rushed up to me, took me by the shoulders and said, “No, you don’t write science fiction! You write Ingrid fiction! That’s MUCH stranger!” I think she blew my hair back like a fierce but friendly wind. Who helped grow my strangeness, welcomed me into The Land of Odd? I’m grateful to say: Ursula Le Guin.
I didn’t write this for her but it’ll do:
Their flowering quince is a delicate tree and lives alone as all trees do or seem to. It is time that brings a tree to the others. It happens underneath and overhead, water and light wake leaves again and again to color and begin the bending, the bowing, to the others still at a distance but coming closer as the years pass; deeper roots find common water and the branches, of whatever sort, pass the time with their leaves breathing, gossiping, nudging, colliding, sometimes crowding those within their reach — the smaller, the weaker, which every tree has been and will be again — but just as often standing shelter, giving refuge because it needs refuge before the inevitable fall to the dry, the deluge, the storm.