HEAVEN HELP THE ONES WHO LEAVE
It was 1976. Warren Zevon was 29, and his life was over.
Rock bottom was in the rearview: the Tropicana, which he could no longer afford. Three weeks behind on his rent at the Hollywood Hawaiian Hotel, he sat in the lobby staring into a coffee cup, hands shaking, penning a song I can’t stop listening to. And if California slides into the ocean, like the mystics and statistics say it will, I predict this motel will be standing until I’ve paid my bill.
I’d been a fan since I was eight — the year of my first cigarette and suicide attempt — and heard Linda’s cover of ‘Carmelita,’ but Warren is like that; his songs sit there, waiting, for decades if need be. They’ll hit you like a semi, but the timing has to be just right. It never seemed like it was, for him. An energetically sensitive Angeleno, born to a Mormon mom and a Russian Jewish dad who sold carpet and made book for Mickey Cohen, he dropped out at sixteen, knowing he was wasting time with anything but music. Moved out to New York for the mid-60’s folk scene, moved back, wrote songs, did session work, released an album in ’69. It flopped. He toured with the Everly Brothers, no longer speaking to each other by then. After a decade of this he was miserable, beyond broke, unable to support his wife and son, living on vodka and cigarettes. He was a musician’s musician, the worst kind to be. Every singer in LA adored him, the critics were all raving — and no one was buying what he had to sell.
Look away down Gower Avenue, he wrote, and chewed on his pen. Look away.
Closed the notebook, went upstairs and snuck out the bathroom window. Jackson Browne was waiting in the getaway car. Time to get it together. Over the next few months, his friends helped him do just that: Stevie Nicks and Lindsay Buckingham let him crash on their couch; Jackson set up studio time, made sure he got there sober, and sang backup along with Carl Wilson and J.D. Souther. But it was Linda who really went to bat for him, covering ‘Hasten Down the Wind,’ also the album’s title. It sold a million copies, won a Grammy — and Warren was suddenly a household name.
Encouraged, he released his own self-titled, bitterly poignant masterpiece, and Linda put two tracks from it on ‘Simple Dreams’, her bestseller that broke every record in America, ousting ‘Rumors’ from its permanent nest at number one, even nudging a posthumous Presley off the country charts. ‘Living in the USA’ included ‘Mohammed’s Radio’, and then he was golden. His third effort, ‘Excitable Boy’ went platinum — and the first thing he did was go back to the Hollywood Hawaiian Hotel, to pay his bill at last. But they wouldn’t take his money; it was an honor to have him run out on them. Maybe an autograph?
And then it sputtered. His fan cult was still buying records and coming to shows, but by the late 80’s he seemed destined to be a footnote on a wistful VH1 show. He quit drinking. It didn’t help. He went back to drinking, which didn’t help either. Quit again. In an unforgiving industry, he was Lazarus, rising again and again, never quite disappearing. It wasn’t just that I was rooting for him; I was him, the baby-faced loner in the corner making art no one was into, refusing to stay down, whatever life threw at me.
I have four weeks to live, and I can’t stop listening to this fucking song.
California, light of my life. The state of us. We paved paradise, sucked it dry, and burned it to the ground. Will do it again this year, and the next. Our freeways are covered by tent cities, our systems flooded with drugs and alcohol that no longer do much for the pain, our people fractured into haves and increasingly desperate have-nots. The infections have taken over what’s left of my body, wracked by decades of MS.
Saying we’re all going to die someday is sophomoric, intangible, like saying we’re going to split along the San Andreas fault. But I look around, and things have gotten more immediate. The quakes are coming harder now, by the daily dozens, maybe due to the fracking — we will exhaust our last drop of oil in 22 years, however we crack open the earth — or maybe we just had it coming, with our death wish drama, our need to get it over with already. When do we hit bottom? Are we there yet? How about now?
When the news came over the radio, I was driving my son to preschool. I went numb. Angry. Who the fuck gets mesothelioma? Warren was a drunk, dammit, he didn’t hang around huffing asbestos. Years later, his son said he’d probably gotten it from the insulation in his dad’s carpet store. Frank Zappa used to frolic in the spray of the DDT truck; his doctor treated his sinus infection by shoving a radium pellet up his nose. Frank died of cancer at my age, 52, which seemed unimaginably old to me back then. I dunno. We do idiotic things, and when we realize they won’t end well, we do other idiotic things, with similar results. We’re a stubborn, suicidal species, prone to denial. Look away.
I’d known it was coming, of course; a year and a half before, his doctor had given him three months to live. Showed them, I guess. Mesothelioma was a death sentence, then as now, but this was Warren, he’d beat it. He always came back, with his hat tricks and his warm rich voice. If he couldn’t turn this around, what hope did any of us have?
None, turns out. Not all of us pay taxes, but we all die.
I drove on, feigning good cheer for my son’s sake. He was two, and a big Johnny Cash fan. We didn’t need to talk about it. But the universe will force your hand. Johnny died five days later, and we had that difficult conversation then. I tried to temper my honesty: I didn’t know for sure, but I thought the afterlife was a pretty good place. Kind of like the swimming pool — not the same as dry land, but pleasant in its own way. Yes, we could absolutely still listen to his music, and talk about him. Plus he got to be with June again, and they were probably really happy right now.
‘I’m talking with my mouth!’ Max said. His June Carter was uncanny.
‘Exactly,’ I said, and hugged him, relieved.
And then he started with the balloons. Every time we’d go to Trader Joe’s a cashier would give him a red balloon, which he’d let go as soon as we got out of the store. We’d stand in the parking lot, watching it drift into the sky, and one day I asked why he didn’t want to hold onto it for a while. It’s for Johnny, he replied, as if I were a little dim.
Oh, I said, blinking. Makes sense.
I kept trying to leave California. Israel, England, Washington, North Carolina. I’d miss it horribly: the sun, the sea, the redwood forests, the long winding freeways and friendly open people. We came back from Colorado, tails between our legs, after the worst winter in its history and a rent-scam eviction that ruined my credit rating. Our new home in Sacramento was overrun by ants: crawling over our breakfast, pouring out of the bathtub faucet like a 50’s sci-fi movie. Max turned nine that week. We knew no one, and didn’t want to party with the ants, so we went for a nice meal at Outback and some quality time at the Lego store, then drove home.
On the freeway, an object suddenly bounced off the windshield and away, startling me. I kept control, and when we got home I got my wheelchair down from the top loader, and noticed something stuck in there: a balloon. A red balloon. ‘Happy Birthday,’ it read. Max and I just looked at each other. Knowing.
Ironically, in a time of radicalized niche identity, the DSM-V elected to abolish Asperger’s, lumping it together with autism. It’s a different condition, more complex, with co-morbid depression, OCD, ODD, coping mechanisms that do more harm than good. Aspies are rarely non-verbal. On the contrary: we get excited about things and can’t shut up. I was not diagnosed until 38; like most women, I’d shut down by then, given up on passing, assuming I was from Mars. They caught Max right away, not that it mattered. There is no cure, no therapy or helpful meds. You simply adjust to being a lonely blunderkind, your only friend a country singer who sends you salutations seven years after his death.
The system, allegedly designed to help, wound up crushing us both. Hard to believe it took me so long to realize that was intentional. I was watching ‘Crip Camp’ last night, and when Judy Heumann said simply, ‘They want us dead. They have always wanted us dead,’ not one of the dozens of disabled people in that room disagreed, or even looked mildly skeptical. We live with this fact, and try to get on with it. But when it’s your child…you fall for the dangled carrots. I watched the hope begin to fade from his eyes at seven, knowing that I could never fix this. And then he turned on me; there was no one else. I was a safe target, the mother who would never stop loving him, who’d always let him back in, no matter what.
He became addicted to video games at three. When I saw that even the most innocuous Magic Schoolbus game would send him into meltdown, I weaned him off them — or so I thought. Instead, over time, he grew craftier, more violent, sneaking off to play, then screaming and lashing out when he was caught. Holes began to appear in the walls, holes I plastered over again and again. He grew tall and strong as I got weaker, paralyzed by pain. He kicked in every door, kicked me as I lay on the floor, crept up behind me one night and tried to strangle me. Somehow, I got away.
My friend Beth was not so lucky. Her son stabbed her to death, then set fire to the house. He did not get away. The curly-haired cherub I’d met at three, singing B-52’s songs for us around the fire, is currently serving a life sentence for first-degree murder, and Beth, who was a genuinely nice person, is gone forever.
I held out till he was nearly 18. When Max chased me down the hall with a hammer and scissors, I escaped into the bathroom, the only room that still locked, and called my assistant, who rushed over to talk him down. No point in calling the cops anymore. Nothing they can do; he’s autistic, they explain patiently. But he’s trying to kill me, I’d say. Please help us. Isn’t this your job? They shrug. Nothing they can do. And, in fact, there isn’t. 5150 means a 48-hour hold — and then he’s back.
You’re doing the didjas right now, where you think there must be more to the story, there must have been something I could’ve done. Did you try…? Yes, I did. We tried it all. Most disabled people do.
Try to understand: Max was a joy, once. Always high-maintenance, but worth it. Off-the-charts smart and funny, eager to discover the world, meet new people, travel and try every food and book and experience. But he grew less so over time, until there was nothing left but fear and fury.
He taught himself to read at three. Just woke up and figured it out, but he still craved our bedtime stories, so I read to him every night till he was 17, our calm eye in the storm. Narnia, Lord of the Rings, Dave Barry, Calvin and Hobbes: hundreds of books, millions of words. Occasionally I’d nod off, exhausted — you don’t sleep much, or well, with advanced MS — and he’d nudge me gently. Wake up.
I wish I had. That I’d woken up, and any part of this would have been okay.
Instead, I called my family in Israel, and asked them to get him into a group home. They have real group homes for autistic kids in Israel, did you know that? Not abusive warehouses that toss you out on the street on your 18th birthday. We did get lucky there, I suppose. He refused to kiss me goodbye, and never really spoke to me again. He’s alive, and I’m alive, though we’re both pretty depressed.
This was two and a half years ago, a period that’s been unbelievably rough for the entire planet. Most of the time I sat alone with my broken heart in my house full of holes, and watched a lot of Netflix. The physical pain, always severe, grew unbearable. I used to be Little Miss Straight-Edge Yogatarian; now I live on Prednisone and Dilaudid, destroying what’s left of my body, barely taking the edge off it. I burn a lot of incense — the smell is very comforting — and listen to Joni and Peggy Lee. And Warren Zevon, of course. Don’t the sun look angry at me….
I miss Max. I miss California. I miss all the things we might have done, the people we might have been had we not been dealing with this folly and mundane insanity. We had a few laughs, but overall, it was pretty grim, and it only got worse. We were never not poor, never given a break, and everyone who was supposed to help us — family, schools, therapists — did their level best to punish us into nonexistence.
He was bullied at school, by teachers and kids. We homeschooled for years, engaged in every social activity, and he never made a friend. A vengeful therapist called CPS two weeks before his bar-mitzvah, on the premise that I’d slapped Max once, so his life was obviously in danger. The cops showed up to take him away, both of us weeping, begging them not to do this. ‘Just jump through their hoops,’ counseled everyone. ‘California CPS is bad, and Sacramento is the worst. They get bonuses for every kid they nab, triple for Native Americans — and they never go after the real abusers, cause they might get shot. But you’re an excellent mom. He’ll be back in no time, really.’
‘No time’ turned into eight months. His bar-mitzvah was ostentatiously supervised, but he read his portion like a ninja, James Brown he was up there, and for a moment I could forget that the state of California had torn out my internal organs, so that every morning I had to sit up and look at this gaping hole in my torso — then start making the calls. And it was very bad. The foster family, the group home: the bruises on his body, the deadness in his eyes. We might have made it, otherwise. Max and I would whisper of escape when the social worker was out of earshot. Fuck you guys, I’m going to Canada, in Cartman’s voice. But the jokes petered out after a month or two, and then we stopped trusting anyone, even each other.
Were it not for the occasional kindness of strangers, we would’ve drowned in all this years ago. But there comes a point where you have to admit that you are, in fact, going to drown. As a child I read an account of a diver trapped in a reef, unable to escape. You hold your breath as long as you can, and then you let it go. Start swallowing water, so as not to panic. Release into the euphoria. The guy was rescued in the end, though he had a pretty bad case of the bends, so was able to report back.
I will not be rescued. I’ve seen to that; I’ve been planning this for thirty years, tomorrow and tomorrow and tomorrow. Let me get into grad school, let me get out of grad school, oh shit I’m pregnant, let me see Max to his first year, his fifth, his bar-mitzvah, to adulthood. Let me finish writing the book, the sequel, the third one, let me make them good. Just hang in there till that motherfucker is out of the White House. In the end, however, the pain will allow for no more postponement.
No one ever tells you how challenging it will be on your own. Dorothy Parker wasn’t wrong: there are only seven basic ways to kill yourself, none of them reliable. But that’s the least of it; I’ve been hoarding benzos for years — no mean feat while in bone-crushing pain during an absurdly mismanaged opioid epidemic — gritting my teeth, eyes on the prize. I have a DNR, but it won’t be necessary.
The hard part, though, isn’t being my own executioner, but my own executor. There’s no one to rely on. Not really. Everyone I know is bad with money, shutting down in a crisis. The cats need to go to safe homes, there’s a cremation to manage, a will to finalize. I’m reluctant to leave any of this to chance; my assistant is also dealing with ill health, and many days is in even worse shape than I, no match for the banks, who have gotten out of control. They drop wire transfers, claim fraud and shut off access, refuse to admit that I’m not in some way working for the cartels, though I lead an uneventful life and have been a customer for 32 years.
Yesterday they informed me that Tami would not be able to close my account after my death, as ‘they don’t honor wills.’ I’d always been under the impression that the point of wills is that you honor them, but now I’ll have to figure that one out, too. Money may not buy you happiness, but I was hoping for less frenetic drama during my final weeks. I meditate several times a day, so as not to lose my mind over the aggressive ineffectuality of the entire planet.
I sold the house, which had tripled in value and was snapped up overnight; I then had for the first time in my life a large amount of money, very little of which I could spend on myself. I can’t drink, do drugs or eat much, and am no longer in a position to travel, even if Covid didn’t exist. I briefly considered a yacht made of cocaine, but am told they aren’t seaworthy. So I gave half of it away to local charities: no-kill shelters, and groups helping the homeless, battered women, pregnant teens, disabled veterans. To friends, so they would not lose businesses or homes. Or hope in general.
Be frivolous, I’d say when they protested. Go to Rome, Brazil, Barbados, sit on the beach, get drunk on Mai-Tai’s and sing along with Jimmy Buffett like you mean it. Remember me with this futile and stupid gesture. Do something sensible with it, and I will fucking haunt you. The rest goes to Max, though he’s still not speaking to me, not even to say goodbye. I will never stop loving him, and if someday this money comes in handy for him to go to school or Hawaii, I want it to be there. He’s my son. I want him to be happy.
There was some arguing from people who had never met me, the sort of platitudes one feeds the suicidal about doors and windows and fighting the good fight, as if I’d been doing something else for 33 years. Mercifully little, though; mostly it’s been packing and paperwork. How to disappear yourself in 90 days, a Polaroid in reverse. It’s less traumatic than you’d think, and it really does get easier: burning letters, papers, poems, drawings, diplomas, resumes, my thesis. Sending treasures to friends who will treasure them. Burying 40 years of diaries, dumping most of the photos, donating the car to the Southern California group that taught me how to surf.
I’ll never forget that morning: the Oceanside sun shining down on a row of kid’s wheelchairs abandoned by the shoreline as if they’d been raptured, their happy shrieks joining mine as I got out there with a guide, barely hanging on as we caught a wave. That surge of energy from both heaven and earth at once, rushing out of me in an elated shout. I never knew you could get that much sand in your mouth. It was wonderful. Wonderful, wonderful, like a Johnny Mathis song.
I went down to Half Moon Bay this week, to say goodbye to the ocean. It’s not an exciting place, this hamlet twenty minutes south of San Francisco; they have a dozen nurseries, five surf shops, several overpriced hotels and restaurants, and a strip of boarded-up stores that once sold real things. No one is immune to the new Third World economy. It’s also home to Mavericks, the most notorious break in California, all jagged reefs, sharks and huge slabby waves that’ll drown you soon as look at you. It was subdued that day, though, so we watched the pelicans instead, gathered in a polite lineup, cruckling to each other, waiting their turn to glide over the water, skimming it to come up with nothing, circling back to wait some more. One flew off half-cocked, possibly crazed with hunger, flailing awkwardly back into the outgoing flyers, who dodged him with quiet good grace, shaking their heads a little. Oh, Harry. Get it together, man.
We had lunch and checked into our hotel. Mind you, I’d confirmed this place to the nth degree: accessible, grab bar, roll-in shower, etc. What I had neglected to ask was if this were some sort of cruel Through the Looking Glass joke; I was able to get into the room, yes, but the fun stopped there. All access was precisely two inches too narrow for my chair, the smallest adult size. We threw our backs into pushing aside the bed, the desk, the coffee table and armchairs, and then I could make it to the balcony, but the door was…well, you guessed it. By two inches. I could get into the shower, but not close the door. Get onto the toilet, but not off it. The bed was a pipe dream I might’ve been able to manage a decade ago.
Frustrated, we made some tea and turned on the TV. Breaking news: 6.0 quake hits Stockton. I’d kept it together till then, but now shouted several unprintable words.
Let me explain: I’ve spent the majority of my life in California, and never experienced a quake. Not one. Everyone in Fresno felt Loma Prieta but me. I was down in Los Angeles in 1994, and slept right through the aftershocks. We get fifty of the suckers every day, and bupkiss. I don’t want the house to fall on me or anything, but a little rock and roll would be fun, just once. This is my birthright.
I looked at Tami, she at me: we can still make it back. This place is dildoes. So we checked out after a short speech to the manager about the humanity of the disabled and measure twice, cut once, and drove home. Forty aftershocks followed, none of which I felt, but the Bay Bridge didn’t collapse on us, and I did get to sleep in my own bed with Jack the cat and not fall off the toilet, so that was nice.
And I got to watch the last twenty minutes of ‘Crip Camp,’ bursting into unexpected sobs of proud sorrow. I’d back-burnered it for months, but I’m glad I waited. It means more, now that I am no longer numb. Camp Jened was founded in 1971 as a summer resort for disabled teens, the counselors a mix of hippies and disabled adults. It meant a lot to the kids, most of whom were living in isolation, segregated into special ed at school or institutionalized in nightmarish places. This was the first time most of them had done something normal. Felt human. They played baseball, sang around the fire, snuck kisses and cigarettes. Someone caught crabs, which spread to all the beds, and they couldn’t stop giggling over this dubious privilege of the sexual revolution. They were hip, no longer alone; this was their Woodstock, one of them explained. They were a community now.
In retrospect, this was bad news for the American status quo, because the first thing they did when they got home was start agitating. 23-year old counselor Judy Heumann formed a committee, Disability in Action, and they picketed the New York Transit Authority. In 1972, you did not have a lot of options if you wanted to leave the house; buses were not accessible, taxis were less likely to stop for you than if you were black, and if you wanted to take the subway, you had to get out of your chair and haul it down step by step on your butt — after which you could get to your destination only by wheeling through streets full of irate, honking NY drivers, as none of the sidewalks had cuts or ramps. When you got there, there was still the issue of getting into the building. And this was the most progressive city in the country.
Transit ignored her, so she filed a class action suit. Her mailing list grew, and when Nixon vetoed the 504 section of the Rehab Act guaranteeing access to government-funded buildings (schools! jobs!), they picketed headquarters. Too expensive, he claimed — at a time when millions of taxpayer dollars were going to bomb Vietnam into the Stone Age. Fifty people blocked traffic at a major Manhattan intersection in their wheelchairs. The novelty guaranteed coverage, and suddenly, there were a lot of eyes on this previously invisible problem. Isolated crips across the country began to take note. But Dick wouldn’t back down. They joined up with disabled Vietnam vets to roll on Washington, hundreds wheeling through the streets of our capital, chanting their frustration. They weren’t going anywhere — but they might as well have been reasoning with a stone wall.
Geraldo Rivera did an exposé on Willowbrook Institution: overcrowded, understaffed, where hundreds of kids spent their lives naked, covered in feces, rarely washed, granted only three minutes a day to be fed. Unsurprisingly, death rates were high — but that was a mercy, wasn’t it? They had been put there by families, at the recommendation of doctors, autistic and blind and CP and polio all lumped in together, because their lives were pointless.
Their lives were not pointless. They just needed a chance to live them.
A lot of Americans watched this show who’d never known anything but a culture of ostracization, Tiny Tim and Quasimodo, figures of pity, fear, and mockery — and this was the horrifying result. Nixon caved under the public pressure, and signed the 504. It was a victory, all right; it just wasn’t enforced. The war didn’t end there, any more than it did at Gettysburg, Seneca Falls or Stonewall.
I envy punk-rock women like Judy Heumann. The fight for the Americans with Disabilities Act over the next 18 years took a lot out of her, death by a thousand Pyrrhic victories — and she did not give up. Me, I spend a lot of time underwater, struggling to the surface only when I run out of breath. But even she is starting to admit to her discouragement: so little progress, and so hard-won. ‘It’s not enough that I can get into a toilet,’ she said at a conference many years after George Bush had signed the ADA into effect. And it isn’t. She’s a college graduate who had to fight to attend any school at all since she was five; a teacher and lifelong activist who has served as adviser to three presidents. She travels all over the world tirelessly advocating for the cause. We could aim a little higher than her not having to wet her pants.
Hitler was not a stupid man; he didn’t start with the Jews. They had value in German society, the cream of science, industry, music and education. There might be blowback. So he started with the disabled, and met no resistance at all. Hans Asperger studied children who shared these peculiar symptoms, then killed them, and the Party moved on to the mentally ill, the mobility-impaired, and everybody else. Many Aspies resist the name; I don’t. We need to know what our fellow humans are capable of, every time we say it.
I may criticize America, but it’s the only nation on Earth where it is no longer legal to treat us as subhuman. I’ve been abroad, I’ve seen what it’s like: us, fifty years ago. People encourage me to move — oh, it’s so much better now; why, we’re even thinking about passing a law in 2030! But I’m going down with this ship. It may look better to you, but you have legs. As a Commie Jew in a wheelchair, I have very little interest in hedging my bets on, say, Germany. And that’s not even getting into the Asperger’s.
By 1977 Judy was fed up with waiting for 504 to be enforced. A lot of people were. Individual lawsuits were being filed and dismissed as frivolous; Health, Education and Welfare (HEW) Secretary Joseph Califano had weakened the regulations into irrelevance. They were published nowhere, so most government institutions didn’t know what they were — or that they even existed. Under Carter, a task force was gutting them still further; apparently the Open Door policies of this administration applied to everyone but us. But the previous five years had brought about sea changes to the disabled community: we were no longer shy about demanding our rights, or forging connections with others under the umbrella of the ACCD. When Judy woke up that morning, she did pack a toothbrush, as there was always the possibility she’d be arrested at the sit-in. That, we were entitled to. Five protests were scheduled at Federal buildings across the country that day, including Washington.
The San Francisco rally was great. Everyone showed up: gay groups, churches, unions, the Panthers. There were songs and speeches, and a chant began, ‘504, Unchanged!’ Regional HEW leader Maldonado refused to come out, so Judy charged the barricades, leading a group of blind, deaf, and chairbound folk inside and up to the fourth floor — the fools had installed ramps and elevators! — demanding to meet with him.
And he didn’t know what she was talking about. What’s a 504?
It had been on his desk for three years, and he hadn’t bothered to read it; nor had his staff. This amendment that could give us actual lives. Judy took a deep breath. Read it then. We’ll wait. He tried to shoo them off. Oh, no, she said. We’re not leaving till we get some assurances. Maldonado glared at them and stalked out.
They didn’t leave for a month.
Do you know how hard it is to occupy, let alone with a serious medical condition? I haven’t even attempted camping in 25 years — but 75 volunteers elected to stay, many going on hunger strikes. Just as well, as they weren’t letting any food in. They cut off the hot water, wouldn’t allow personal assistants in until Reverend Cecil Williams from GLIDE read them the riot act. Fifty more disabled people snuck in to join them, as the headlines screamed, ‘An Occupation Army of Cripples Has Taken Over!’ The other protests were being starved out, too. Denver fell, New York, then DC, the big one. LA was holding strong, but after days without food or meds, they buckled too. San Francisco was the last one standing.
The building was locked down. Then they cut off the phones.
When you spend your life in isolation, you find ways around these things. The deaf signed out the windows: press releases, plans of action. They jury-rigged a fridge, set up a first aid station. Meetings were held, and everyone was heard, patiently and with respect, even those who had to spell things out on a board, letter by letter. We had been ghosts for centuries, but were coming to life now, ravenous. Black Panther Brad Lomax signed a message out the window, and that night six Panthers showed up with food, strolling right past the guards. We are large black men with Tupperwares. Do not fuck with us.
This was the point where I started to sob uncontrollably.
That they cared. That they of all people cared enough, not just to wave a few signs, but to overcome our nation’s crushing history of crabs-in-a-barrel minorities dragging each other down, to do the unglamorous work without which nothing else could happen, risking arrest and worse. This was only seven years after the murder of Fred Hampton and the LAPD’s violent attack on Panther headquarters, where they were engaged in the dangerous pursuit of feeding thousands of hungry children. A Senate committee grudgingly allowed that mistakes were made, but they were still seen as this terrifying subversive threat to America — and these were the guys who fed us for the rest of the month, for free, on their limited resources.
‘You’re going to make the world a better place,’ one explained. ‘You’re in here sleeping on the floor to do that, and we’re going to make sure you get fed.’ They were our allies, and they were not the only ones. A lesbian couple showed up to wash everyone’s hair. Hundreds joined the vigil, the media covered the drama — ABC’s Evan White was relentless, God bless him — and Governor Brown and Cesar Chavez sent telegrams of support. Mayor Moscone brought in a doctor at his own expense, and Congressman George Miller came to talk with the protesters, then convened a congressional hearing right there in the building.
President Carter promised to ‘become involved,’ but Judy knew this sacrifice could not be in vain. No vague promises of studies and we’ll see what we can do. She would accept nothing less than Carter signing the 504, unchanged — and enforcing it. HEW’s Gene Eidenberg showed up for the hearing unable to look anyone in the eye, stammering that really, cripples didn’t go to college anyway (the Catch-22 may have eluded him), and ‘separate but equal was fine.’ The room was stunned. Someone slipped out, then a roar of fury rose from a thousand throats. 23 years after Brown made the term a cruel joke, we were getting this? At which point, and I am not making this up, Eidenberg ran out of the room and hid. George Miller ran after him, kicked in the door, dragged him back, and Judy tore him a new one. But it was obvious now: some would have to go to Washington, as the others held down the front.
Already drained by the time they hit Dulles, dirty and exhausted, Judy was undaunted. They would speak to Califano or Carter, get the commitment to sign the unchanged 504, or die trying. They slept on the pews of a sympathetic church, hired a U-Haul to carry them around, and held candlelight vigils outside the politicians’ houses, churches, Pennsylvania Avenue. The leader of the free world, whom they’d all worked so hard to elect, had a choice: he could stop ignoring them, sit down for a few minutes and talk, adult to adult — or he could sneak out his own back door in shame. He chose the latter.
East Coast activists wrung their hands: oh, this is too radical, it’s tacky, you have to compromise. But other demonstrators flew in from all over the country to join them; Evan White followed Califano everywhere, shaming him nightly on ABC News — and Judy was not backing down.
There was nothing special about April 23, 1977, but that was the day the world changed for us all. Califano simply decided to stop being an asshole, and sign the 504. Unchanged. Victory celebrations were held all over America. The occupiers spent one last night in the Federal building, partying with the guards, before they emerged into the dawn, singing and triumphant. And Judy got to go home and wash her hair, at last.
I got lucky. The ADA became law a year after my MS kicked in, so I never knew a life where, at least de jure, I was not considered human, a productive member of society. Real life, of course, is a different story. You don’t file a lawsuit every time all your friends are going to the club down two flights of stairs. I refused to get a parking placard for years, because I didn’t consider myself disabled enough, so it took me half an hour to drag myself across campus, limping and falling down. When I finally relented, I was often chastised by officious strangers, even after I started using a cane.
Kaiser was a nightmare. They liked well people who didn’t cost anything; the chronically ill were tiresome, and should just go home and die quietly. Should you think I’m exaggerating, consider this: I was denied physical therapy by Kaiser SF ‘because I was just going to die anyway.’ After a cry in the parking garage, I thought, hold up, they can’t do that. Went up and hollered, and they backed off, so I thought it was just random callousness, ha ha. After being told the exact same thing in those very words in Fresno and Denver, however, I understood: this was corporate policy. They’d been given a script.
I struggled along with a cane and a walker for years, falling frequently, breaking bones, my lower back never not in agony. I thought going into a chair would be the end of the world. Imagine my surprise when it was quite the opposite. Everything was easy now, fluid and fast. I got hand controls on my car, lugged the chair in and out of the trunk, and I was mobile, baby.
You’re not you anymore, when you’re in a chair. You’re the cripple. People talk over your head, avert their eyes, address someone else to translate for you. Yank their curious children away as if you have leprosy. Tell you how brave you are in the supermarket, how inspiring. I’m not brave, dude, I’m buying tomatoes. The world is now a sea of crotches and asses. Employers enthuse over your resume, can’t wait for the interview, you’re perfect — and then their faces freeze when you roll in. Yeah, you’re not getting this one either; doesn’t matter that your child is hungry. Yes, you have to work. Social Security is not enough to live on, however you scrimp — and they won’t give you food stamps, even though you’re light years below the poverty line, because that would mean admitting that Social Security is not enough to live on.
I was one of two disabled individuals at my gym. They had a large locker room with a handicapped stall — but no dressing room. Not even a curtained alcove for privacy. So you could whip your kit off in front of everyone, which most women preferred not to, or you could change in the handicapped stall. That’s what it’s there for, right? I mean, it’s not like — ohh. I was civil about it, but wouldn’t back down, and this fight went on for three years as they claimed that a curtain would be tacky (peeing my pants was somehow not), and finally a lawyer friend got tired of my grousing and wrote them a real barn-burner of a letter, and they put dressing rooms in over the weekend. Doors and all, cause they’re classy like that. Then they proceeded to hound and humiliate Max and me until I got tired of paying for this abuse and left. I never swam again, which is a shame, as it was one of the few things I truly enjoyed.
For decades I was denied drugs that might have eased the pain, given me some semblance of a life. I might have slept, or eaten without agony. I had no history of drug abuse. None. I don’t enjoy being stoned. I enjoy being alert and functional — but they refuse you that, because people in pain don’t fight back.
If you are in a chair, there is no way that you can be a good mother, or even an adequate one. The nurse at Kaiser who told me I was pregnant followed it up with ‘When shall we schedule the abortion?’ It wasn’t even a question in her mind. If you demand anything from any government agency, however entitled to it you are, they threaten to call CPS, and frequently do. IHSS was real big on that. If I needed a personal care assistant, how could I possibly take care of a baby? I dunno. Just because you can’t run a marathon, doesn’t mean you can’t take your kid for a walk. If someone is helping me out with the laundry and cooking, I can take better care of my child. Most working mothers receive this help, and no one bats an eye. But no, they would see us both in institutions at ten times the cost of paying minimum wage to a worker to come in a few hours a day, then be able to go home and feed her kids. This has nothing to do with budgets or concern for anyone’s welfare. They want us dead. They have always wanted us dead.
Tell me I’m imagining this.
You can’t legislate or charm this away. I know, because I’ve been dancing as hard as I can for 33 years — look how funny I am, how smart and easy, not a burden, never complaining, please love me, please think I’m valuable in some way, however small. Please?
No. My own brother and sister didn’t speak to me for years at a time. There was no hostility there; they just didn’t want to deal with my existence. Better to think of pleasant things. Look away.
And it is so normal, so banal, the way you are disappeared, that eventually you get tired of fighting.
And then you disappear.
There was one scene in ‘Crip Camp’ that broke me, in the best way. They’re rolling on Washington, crips of every color and creed, the halt leading the blind, arms linked. It’s 1990, they’re demanding some damned thing, probably the ADA, but I’m no longer keeping track, because the battle was never over, even after its passage. Never would be, and you could tell they knew it.
And they look so fucking happy.
They get to the steps of the Capitol, and they all start climbing. A black man in a tweed suit is inching up on his butt, step by step, calm and dignified, when he suddenly bares his teeth in a ferocious roar. A little kid with floppy blond surfer hair is dragging himself up by his fingers, laughing and shaking off offers of help. I’ll get there, he’s saying, I’ll take all night if I have to! They didn’t need to make it to the mountaintop; it was enough to join the others struggling up these stairs to prove a point to politicians who wanted them to fuck off and become invisible again. Not today, boy. They all get to the top, and Judy’s in there testifying to the Senate like an Amazon, and three months later they passed the ADA.
Naturally, I’m a goddamned puddle at this point. But a happy one, you know? I am that man. I am that boy. I am Judy. I am every one of my brothers and sisters who spend every day of their lives in this interminable climb. We get to be here. We get to have lives. And we get to be happy. That’s the whole point of America.
But we also get to leave this party. I find the argument over one’s right to die absurd, especially regarding the disabled. A, this is a basic human right, that no one has the authority to grant or keep from you. B, if the government wants us dead, it is the ultimate hypocrisy to suddenly pretend to care.
Exit, pursued by the bear. There are three reasons for suicide: the world has let you down, you’ve let yourself down, and chronic pain. A lot of us are dealing with all three. Much was made of a 5% decline in 2020 suicide rates, failing to mention that the stat was taken from affluent middle-aged whites. As for the rest of us — poor, disabled, people of color, young and old — well, the numbers were higher, and overdoses were through the roof. Desperadoes under the eaves, we huddle together, trying to keep each other here as long as we can, but each day brings fewer reasons to stay. The Four Horsemen gallop through the pages of every newspaper, until all I can face is the crossword.
I’m not sorry I’m killing myself. I’ve been a bemused tourist in this world since I was a kid; I had no fear of death, and hung around mainly to finish what I started. Well, that, and I was stymied by The Note. It seemed rude not to leave some sort of explanation, even if it was obvious, so I’d get started, go further and further back, waxing eloquently wroth, and by the time I’d whipped it into feasible shape, fact-checked, and corrected all the apostrophes, it was three days later and I didn’t want to commit suicide anymore.
I got better at it; I wrote one that went on for 800 pages, and only covered my first 20 years. It was allegedly a memoir, but I knew. It took three years, every day of which was not so much opening a vein as feeding my limbs into a wood chipper. It felt good to get it out of my system, and there was a triumph in having faced it without flinching or sugar-coating anything. A good fifth of it is even readable. But when it was done I felt worse, regarding this quantitative proof of how badly even the golden years had sucked.
I don’t regret my life. I fought hard, and had solid friends who refused to ditch me when the going got rough. I taught for decades, and was great at it: hundreds of people are smarter now, because of me. I wrote and wrote and wrote, and gradually got good enough that even I thought I was good. Even in my darkest moments, particularly then — I was funny as hell. I gave birth to a beautiful boy, raised him to adulthood on my own, and it’s entirely possible he’ll get his shit together someday. Stranger things have happened. I traveled all over, and fellow travelers were always welcome in my home. I learned 13 languages. I strove for the truth, however hard, complex or uncomfortable it was to face. I keep it civil, and am kind to those who deserve it, especially cats. I didn’t do these things for any payoff in this life or the next; I don’t think it works that way.
I reconnected with an old friend the other day on Facebook, and told her. She took it well, aware I wouldn’t be surrendering without due cause. Remember, we asked each other. Remember, remember that time we drove out to Vegas to swim with sharks for Max’s birthday? Hey, I said, remember that place we took the kids to? With the creek? Cause I never found it again. Sure, she said. Pi-Pi Valley. Oh, fuck you, it’s Miwok. I’m going there, I told her. It’ll be my last trip, I loved that place. Rock on, she said.
I was sure I’d be thwarted somehow. But no, I woke after a good night’s sleep, was able to shower and pack, and all the financial institutions had declared International Stop Fucking with Aviva Day, all the battles I’d been waging for weeks suddenly evaporated. Despite the drought, the creek was still flowing, full of young smelt and dragonflies, and the forest wasn’t on fire. We got there in one piece, Tami claiming the whole way that these goddamned crazyass mountain boys were going to drive us off the cliff, and we were going to run out of gas and be eaten like in ‘Deliverance.’
Nobody got eaten, I replied, engrossed in Hellfire, a Jerry Lee Lewis bio. Just fucked up the ass. We’ve got enough gas to get there and back twice, and they have gas stations in the foothills. Calm down.
Hellfire is a fantastic book, by the way. You should read it. It’ll be my last library book. I gave them a bunch of money, too; libraries have been a lifelong refuge. I’m almost completely out of money. It’s great — and I’m maxing out my Amazon credit card with donations to the Sierra Club, leaving Bezos holding the bill.
But we got there — and it was called El Dorado Park. I had to laugh: our mythical golden mirage. California wasn’t destined to be a dreamy utopia after all, just one more joint governed by the same needs that have always driven humanity: greed, sex, violence, and well-made jeans. Yet, in the midst of all this desiccated chaos: beauty. It was Max’s birthday, so I just sat by the creek and gazed at its swirls and ripples, thinking about how much I loved him, how much I hoped he’d be okay.
Today, he called at last, and we had a really nice talk. He’s not in the best shape, but I think he can work towards that. There’s money now, I told him. As the Right Reverend David Lee Roth said, it may not buy you happiness, but it’ll buy you a big honkin’ yacht you can park right next to it. I love you, Max. Always.
After my diagnosis at 23, and the dismal prognosis, I sat down on the rug and made a pact with God. Take what you need, I told him. Just leave my hands and eyes, cause I’m going to need them. I need to see this world and never look away, and I need to make art about that. Take those, I’m out — and you don’t get to give me any shit about it. Clear?
I took his silence for acquiescence, and over time, he took it all.
Here is a useful tip, if you want people not to kill themselves: don’t bother with suicide hotlines. They only put you on hold. I have a lot of depressive friends, and we all agree that by minute 40 of them assuring you how valuable you are, you’re really ready to kill yourself. 5150 is for cowards. You be there. You. Drop a text once in a while, call, go for coffee. It’s not that hard. This staying alive thing is a gradual ongoing process for us all, and you can commit to it — or you can stop kidding yourself.
Twenty days to D-Day. Ten. Five.
Last year’s fire season was twice as bad as the worst in our state’s history. This year, it’s worse. Many are started by the homeless, one hopes unintentionally. But could you blame them, if they were not? The Delta variant is cutting swathes across the planet, billionaires are spending their ill-gotten gains on phallic pogo sticks, bees and polar bears are still dying, animals are openly attacking us now. And I can’t blame them either. Nothing makes sense. Even as I let my lawn languish and have cut down to one flush a day, Germany appears to be entirely underwater.
Okay, that one’s kind of nice. They really had it coming.
I am heartbroken about all this, and I am also thinking, ‘So long, suckers!’
I promised my realtor I wouldn’t do it in the house. He’s a really nice person, as are the new owners, so I’ll be keeping that promise. I made a reservation at a mid-grade motel. The cheaper the joint, the more likely it is to be accessible. Weird, huh? My friends are coming to be with me this weekend, and take my cat Jack home with them. We’ll eat food and pick peaches from the tree I grew from a stone, flambé them in rum. I’ve always loved setting things on fire. People all over the world will be praying and singing songs for me, and a woman I don’t even know is going to play ‘Desperadoes Under the Eaves’ on her cello as I shuffle off this mortal coil. Is that not the most wonderful thing you ever heard?
Isn’t it great, that I get to do this, and it can be honest and nice, instead of an act of furtive self-loathing? That we can say proper goodbyes and tell each other all the things we need to; that no one need wonder if there was anything they might have done, because duh, no. That said, we’re having a whale of a time researching the subtleties of California’s Right to Die Act pitted against the Feds being douches about this, but that’s more for the Agatha Christie intrigue than anything else.
It’s all going to be okay, you know? All of it, in the end, will be utterly, utterly, utterly okay.
People keep asking me what the afterlife will be like, as if I’d gotten to see a special preview. I have no idea, to be honest: maybe a more sedate Valhalla, with infinite books and cats, where they turn the music down at midnight. I’m hoping for a scenario where I get to hang out with Bob Marley, Prince and Oscar Wilde, Ellyn Willis, Molly Ivins, Dorothy Parker. I’d love to talk to Malcolm X, but he’s probably too cool for me. Or maybe we’ll all just be bright light and energy, which sounds a little boring, but you know, I’ll take it. I do hope I’m not reincarnated, at least not right away, and not here. This place is dildoes. And if I wind up in some Dante-esque lake of fire for having said ‘fuck’ too much, I’m gonna be royally pissed. Might even go Judy Heumann on their ass, because really, there are limits.
I believe this motel will be standing until I’ve paid my bill.
A few friends asked if I wanted them to be there at the end. I recoiled, unable to think of anything worse. No, I don’t want anyone hovering, asking if I’m dead yet. This ain’t Monty Python, motherfuckers. I’ll have a nice book, and a playlist (yes, fuck you, I made a playlist, all Vera Lynn, Nat King Cole and Kermit the Frog), candles and incense, and I can release into the euphoria, at last. There will be no pressure to come up with anything pithy and profound. Nothing to do today but smile.
So here are my last words: Be kind to each other, you fucking fucks. Don’t make me come back there.