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Mensch of the Year

Stacy and Lowell

Stacy and Lowell

A bit of clean laundry for the New Year. No, more than that: a bit of nachas, the Yiddish term for happiness, particularly that generated by one’s child.

My daughter was named a Mensch of the Year by LA’s Jewish Journal, a distinction she richly deserves for having turned a difficult and heartbreaking life experience into something useful, starting her own organization to raise money for research into Crohns disease.

Not, I hasten to note, that I deserve any credit: I’ve always said that Stacy was born almost fully formed as exactly who she is—it’s the only way to explain how utterly different from me she was and is. Once, when she was five and I was carting her all over New York State in search of some elusive nirvana, she sat on the back of our U-Haul truck once again with our packed possessions and exclaimed, “I can’t wait till I grow up so I don’t have to live with nobody!”

More recently, when I tried to do something new and different with an advocacy group I worked with and they weren’t interested, I simply left and ceased doing anything. In a similar situation, Stacy started her own group.

Lowell

Lowell

When my grandson Lowell was diagnosed early on with IBD, specifically Crohns, I thought, as most people probably do, that it just meant stomach aches and dietary restrictions. It turns out to be much more problematic, in some cases, including his, causing chronic pain and fatigue, nutritional deficiencies, delayed growth, and constant crises necessitating invasive medical tests, visits to the ER and hospitalizations, even surgery.

Besides dealing with all that and more, Stacy started running marathons. So did Jonah, Lowell’s older brother.

Marathon runners Stacy and Jonah

Marathon runners Stacy and Jonah

I’m thrilled that my daughter has been recognized for her hard work and advocacy of people with IBD, and not just because she’s on the cover of a magazine, though I admit I got a huge kick out of that. The deeper meaning is that a lot of other people will learn about what she’s done, she’ll get energy and kudos, and it will raise awareness of Crohns disease.

As for me, I’m starting 2015 brimming with nachas.

Happy New Year all.

 

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Cheryl Marie Wade

Cheryl Wade

Cheryl Marie Wade

A Sassy Juicy Poster Girl Gone Awry

March 4, 1948 – August 21, 2013

At a memorial for Cheryl Wade, or celebration of her life, held on the UCBerkeley campus yesterday, four or five of her close friends offered memories of her and their friendship that moved me to tears. Cheryl was one of those people that others, myself among them, sometimes envied for her wide circle of devoted friends. They came from the different areas of her life, each fitting into another aspect of her many-faceted personality, art, and work. With one she went to Broadway musicals (and later acted them out); with another she organized performances, and so forth and so on. She was almost always authentic: she didn’t hide her anger for fear of alienating people, or bury resentment under fake smiles.  She was a political activist who placed her art above and beyond any message, yet delivered a heartfelt message every time.

“I want my art to be so good that someone who doesn’t give a damn about disability comes to see me because I’m good,
and goes away with a new consciousness about disabled people.”

I met Cheryl the way I met a lot of people in the Bay Area: interviewing her for a newspaper story.  I keep trying to remember where I first heard of her, how she showed up on my radar in the first place, but I still haven’t figured it out. It would’ve been logical to see one of her shows and want to write about her, but I didn’t see her perform until after we met. Cheryl onstage was inspiring, and had I seen her there first I know I would’ve asked for an interview. But she was just as inspiring off stage as on, and interviewing her was one of the high points of my journalism career. The high lasted quite awhile, as I interviewed and wrote about several other disabled performers after her.  Disability culture is, in a word, HOT!  As Cheryl once told me, “The gift of disability is the experience of not taking physical or mental abilities for granted.” She  exemplified this idea, as usual, in poetry:

Do you walk?
Do you feel your muscles tighten?CMW Onstage
Do you drag bare feet through warm shag carpet?
Do you feel the muscle in back of your right calf
tightening and loosening,
tightening and loosening?
Do you walk?

My absolutely favorite of all Wade’s poems is Not a Reason To Die, which she wrote after reading an editorial by an able-bodied man proposing that people with certain levels of disabilities be allowed to die.

I’m trickster coyote in a gnarly-bone suit
I’m a fate worse than death in shit-kickin’boots
Unknown-2I’m the nightmare booga you flirt with in dreams
‘Cause I emphatically demonstrate: It ain’t what it seems
I’m a whisper, I’m a heartbeat, I’m “that accident,” and goodbye
One thing I am not is a reason to die.

I’m homeless in the driveway of your manicured street
I’m Evening Magazine’s SuperCrip of the Week
I’m the girl in the doorway with no illusions to spare
I’m a kid dosed on chemo, so who said life is fair
I’m a whisper, I’m a heartbeat, I’m “let’s call it suicide” and sigh
One thing I am not is a reason to die.

I’m the poster child with doom-dipped eyes
I’m the ancient remnant set adrift on ice
I’m that Valley girl, you know, dying of thin
I’m all that is left of the Cheshire Cat’s grin
I’m the Wheelchair Athlete, I’m every dead Baby Doe
I’m the Earth’s last volcano, and I am ready to blow
I’m a whisper, I’m a heartbeat, I’m a genocide survivor and Why?
One thing I am not is a reason to die.
I am not a reason to die.

I’ll be damned if I’ll let anyone judge this life as not quality.
Thousands of non-disabled people would be very fortunate to have my life.”

She was right. She was sassy. She was juicy. She was brassy.

RIP Cheryl. You will be missed.

Cheryl Wade Must-See’s:

Disability Culture Rap Part I

Disability Culture Rap Part II

Thank You Cheryl Marie Wade: A You Tube channel where anyone can visit or contribute.
For info on uploading your own video contact: ThankYou CMW@gmail.com.

Governmental Disability Program

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success-vs-failureI just have to recommend this article, “Unfit for Work” about government programs for disabled people who cannot work. I sort of knew this, but in a general way; here it’s articulated clearly in such a way as to connect all the dots. Even as someone who has been on the federal program and whose son is still on it–both of us denied at first, reversed on appeal–I’m not at all offended by the writer’s conclusions. This is excellent journalism: read it!

When Writing Doesn’t Happen

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scared2

It’s been more than a month since I blogged—possibly the longest silence on record since I started Dirty Laundry in October 2006. And it’s not as if I’ve been writing something else, like a novel, or ghosting a book for someone else, or even copyediting. Nope. I haven’t been writing, period. Of course, there’s a reason; as my dearly departed friend Richard used to say, “There are always reasons, never excuses.” Richard was hard on everyone, including himself, and was consequently depressed most of his life.

Actually there’s only one reason I haven’t been writing: my son Daryl was hit by a car (his second such adventure), broke his ankle, necessitating surgery, and, since he can’t walk and take care of himself, he’s been in a rehab/nursing facility since the beginning of January. I call the place the Garden Spot of Alameda. Daryl’s an adult of 47, so readers might wonder why the circumstances of his life would affect mine. The short answer—and that’s the only one I’m going into today—is that I’m used to taking care of Daryl, as he was born with a chronic medical condition (hydrocephalus)  that led to seizures, learning disabilities,  and other physical and mental challenges. His first car accident, in 2004, inflicted further brain damage, or TBI (Traumatic Brain Injury). The upshot of all this is that Daryl needs a lot of support, primarily emotional.

Daryl, Immediate Post Accident

Daryl, Immediate Post Accident

When he first checked into the Garden Spot I felt so bad I visited daily, but at this point he’s used to it, so I’m only going two or three times a week. If there’s a reason beyond time that I haven’t been writing, it’s the traumatic crash course I’ve been getting on American (all?) nursing homes. Though the facility serves two populations, not just the elderly, the aged predominate. And, since everyone in this place is, I believe, governmentally subsidized, the residents tend to be, um, financially challenged (Don’t you just love my euphemisms?). The motives of the owners and managers ….well, I’m not going to go into the specifics until Daryl is home safe and sound. In the meantime, I’ll speak in generalities.

Nursing homes are notoriously hellish. After my father died, my mother began telling me not to put her into a nursing home, ever. Being a 30something brat who, like all brats, was ignorant of aging issues, I poked fun at her. Now I wish I hadn’t. This is an important, urgent issue that all families should talk about. Attention must be paid! I’m now telling my kids all the time, “Don’t you ever put me into a nursing home!” And, of course, they make fun of me.

I would not last one night in this place. To begin with, I’m claustrophobic—and they put 3 beds into not-so-big rooms. Also, I consider myself, like 25% of the population, a Highly Sensitive Person, a designation that in recent years has gained recognition. I’m certain I’d be having panic attacks in the Garden of Alameda—especially if, like Daryl, I was at the mercy of people I didn’t know, some of whom aren’t entirely wonderful, and I couldn’t get out of bed by myself. Because he has a broken ankle on the right and a fractured toe on the left, Daryl needs someone to help him get into a wheelchair. He uses plastic urination bottles and has a portable toilet next to his bed.  As stated, I don’t want to get too specific–but staff has to empty these receptacles. Would readers care to speculate how quickly they perform this task? Can you imagine the odors that fill the room when these containers aren’t dumped in a timely manner? And that’s just one of the discomforts that can drive a Highly Sensitive Person batty. Not one day. I couldn’t do one single day.

The CountFor the first month Daryl had a roommate who was, IMO, certifiably insane. The night he was transferred from the hospital to the Garden I was hanging his clothes while the nurses got him into bed, when R., the roommate, came over and began whispering to me about all the trouble Daryl was going to have getting the nurses to help him use the facilities. He was a real yenta, this guy, and I immediately took myself away, vowing to avoid him from now on. During the next few days, though, he  helped Daryl a lot, getting him water, or nudging a nurse if he needed one. He saved his newspaper crossword puzzles for me, went out of his way to be “helpful”. He also told funny stories—so I changed my mind, figuring my first impression of R. had been wrong. Eventually, however,  I discovered that my first impression was in fact one hundred percent spot on. R. was constantly in our business. He eavesdropped on us and unashamedly brought up the things he’d heard; when I was on the phone with Daryl he’d shout out conversational tidbits to me; he called me “Mom” and followed me out to the lobby whenever I left to give me his reports on Daryl’s behavior. He was driving Daryl completely crazy. The last straw came when I was trimming Daryl’s beard, and kept telling him not to talk so I wouldn’t slip with the scissors. R. walked up to the other side of the bed and hit, yes, HIT Daryl on the arm, hard, and yelled “Stop talking!” Daryl got pissed off, picked up a half full cup of coffee and threw it at the wall, and told ME to leave (Daryl takes out all his frustrations on me because I’m “safe”.)  R. had the chutzpah to follow me out to the lobby, saying “See? That’s what he does!” After that I wouldn’t let him whisper his reports to me, or inject himself into our conversations, or shout through the phone at me. He got weepy, almost crying as he begged me to engage with him, but I wouldn’t. Yes, he ‘s a lonely guy—60 years old, and he never had a single visitor—but is that my problem? Fortunately, the social worker found a permanent residence for R.—I never found out WTF he was doing there to begin with—and he left. Daryl’s attitude and behavior since R. is gone has been a hundred percent improved. No more yelling or throwing things or telling me to go home. In fact he’s the perfect patient, despite wanting desperately to go home. Which might happen next week.

red typewriterI was planning to write a lot more here, to catch up on the movies I’ve been seeing, podcasts listened to, friends old and new—as well as some of the more amusing residents of the Garden. Unfortunately, I’m already drained. This is what happens when a writer doesn’t write every day, or almost. Doris Lessing says she finds herself becoming “unbalanced” when she doesn’t write for a few days. This applies to me as well. Bad enough being unbalanced, but I bet Lessing doesn’t let her craziness show; but me, I’m talking to myself a mile a minute! Sure, most of us talk to ourselves once in awhile–but I’m a regular Chatty Cathy these days, and I’m doing it out in public. Without the outlet of the paper, or screen, words just come spilling out of my mouth. I don’t even realize I’m doing it until someone looks at me oddly on the street, and I get embarrassed. Or I’m in the supermarket, when suddenly someone swings their head towards me, thinking I’m talking to them. Unbalanced indeed! Finally, when I do try to write, I seem to undergo a certain level of fear. It’s like I get when approaching a new story, or  unfamiliar territory. It’s as if I have to wade through the shallow end of the pool before I can get to the depths. Like starting over.

DeskChaosSo here’s what I hope to do: I’m going to write a little bit every day, and post it if I think it will interest anyone. I know it will interest other writers—we all love hearing about each other’s process, especially how to work our way out of Writer’s Block.  I‘ve frequently claimed I never, or rarely, have Writer’s Block—but what else is this? It’s just that the way I’ve heard it described, Writer’s Block usually comes out of nowhere and hangs around with no rhyme or reason. My blocks, if that’s what they are, have a root cause: lack of writing, usually of necessity. When my children were little I grabbed every scrap of time I could for writing, and I learned to be ready to roll the minute time became available. For a mother, Writer’s Block is just one more unaffordable luxury. Now I can afford it. But surely there are better ways to spend my time.

Aren’t You Glad You Live in America? Oppression of Swingers in China, People with Disabilities in Russia

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Don’t Swing in China

Ma Yaohai, a 53-year-old computer science professor at Nanjing University of Technology, was recently sentenced to three-and-a-half years in prison for “crowd licentiousness” —  better known as swinging.  Roaring Virile Fire, as he calls himself online, belongs to clubs that practice group sex and partner swapping, and organized many of the sex parties himself.  He was arrested after a group who were caught at a hotel sex party named names.

Maximum sentence for the “crime” is five years in prison. Ma was the only swinger among those arrested who refused to plead guilty, for which he was doubly punished. Three defendants were acquitted with no penalties because they turned themselves in, and 18 received sentences of less than 3 years. The Court said that, by pleading guilty, they demonstrated “good attitudes.” Ma, on the other hand, must have a bad attitude, as he stood up for sexual freedom. “What we did,” he said, “we did for our own happiness. People chose to do it of their own free will and they knew they could stop at any time. We disturbed no one.”

In a rapidly changing society, China’s laws on sexual behavior are undergoing much debate. In the 1980s, people convicted of the now defunct crime of “hooliganism” — which prohibited several types of sexual activity including group sex — could be executed. While acknowledging much has changed, sociologist and sex expert Li Yinhe was disappointed in the court’s ruling. “The real improvement,” Yinhe said, “should be the complete abolishment of this crime.”

Citizen opinion, of course, varies. “This behavior has caused social chaos,” wrote someone on an online forum. “People like you should be punished severely.” Like most people and societies, China’s sexual laws, mores and attitudes reflect much confusion and ambivalence. Pornography is banned, but users get through blocks on adult websites with software made to circumvent the government’s system of censorship. “Adult health stores,” the Chinese version of Good Vibrations, are common throughout China. People document their promiscuity for wide Internet readerships. Every time a corrupt official is exposed, a story about his pampered mistresses follows. Prostitution is illegal, but brothels poorly disguised as hair salons exist in every city.

Sounds kind of familiar, doesn’t it? Still, you have to admit, American swingers aren’t likely to end up in jail. Three cheers for American freedom! And another three for Roaring Virile Fire, a brave man indeed.

If You’re Disabled in Russia You’d Better Be Athletic

While the Russian Olympic team brought home a paltry three gold medals  from Vancouver,  their Paralympic  team – people with disabilities – took first place in a parallel competition, snaring 38 medals, including 12 golds. They proudly carried these home to Mother Russia, despite having gotten a lot less government financing than the inferior able-bodied squad. Their victory is even more impressive when you consider that in Russia disabled people struggle just to get in and out the door.
Accessibility is so limited that some disabled kids have to study at home because they can’t get around the schools. Perspektiva, an organization fighting for disabled people’s rights, resolved one case by providing a chair lift so a fifth grader could get to his upstairs classes.

The Kremlin did a quick about-face when the Paralympians’ success provided some solace after the embarrassment of the Olympics. President Dmitri A. Medvedev fairly gushed at a ceremony welcoming the conquering heroes: “It was so nice to watch and cheer for you, especially since the Olympics held earlier evoked such ambiguous emotions. You are all simply fantastic!” He even promised to allocate funds for developing athletic infrastructure.

Sochi, a city on the Black Sea south of Moscow, is to be the site of the 2014 Winter Olympic Games. After months of negotiations, Perspektiva finally led the first disability awareness training for those who’ll be working at both the Olympics and Paralympics. Let’s hope that people with disabilities excel again – maybe they’ll earn a few ramps.