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Monday, May 23, 2016

In Miami, Cuban Culture, No Passport Required



The New York Times Loves Calle8 -- Can we please redesign it for pedestrian safety.



As night approached so did the lure of Little Havana’s night life. Ball & Chain, I discovered, is a gorgeous, lush modern stab at a classic Cuban nightclub with napkin-over-forearm service.

The mojitos here are a near-perfect blend of rum, lime, club soda, fresh mint and sugar, and the tapas are flavorful and Cuban inspired.

During the 1950s, the club brought in headliners like Billie Holiday, Count Basie and Chet Baker.

It closed in 1957, and reopened in 2014 to rave reviews.

That night, the bar was packed with millennials, the back of the club having transformed into a tropically decorated open-air patio, and the Pineapple Stage animated with Latin jazz.

Full story -- click here

Thursday, May 19, 2016

DISABILITY...



A FATE WORSE THAN DEATH?

By Heidi Johnson-Wright

Step right up, kids. I’ve got something I gotta tell you, and that something it this: drive stupid and you’ll face the worst possible fate you could ever imagine.

What do I mean by “drive stupid?” I mean taking your eyes off the road, especially for stupid reasons. Like to replay that Demi Lovato tune. Or to re-adjust those flesh tunnels in your blown-out earlobes. Or to send a text from your Hushed app to that unwitting recipient who thinks you’re a chick from Barcelona when you’re really a dude from Barstow.

You see, distracted driving can have some mighty brutal results. Like wrapping your dad’s Kia Sorrento around a tree. Think how mad he’s gonna be when it’s totaled ‘cause your leg is now attached to the carburetor. 
 

I know what you’re thinking. You’ve seen the “scare ‘em” movies in Driver’s Ed of real-life crashes. You think I’m trying to frighten you with the specter of death.  Au contraire, amigo mio. I am trying to make you piss your pants at the thought of something much worse than death: being disabled.

Being disabled is way worse than death. At least a corpse is still a full-fledged person. But a wheelchair user? Truth be told, going from “cool to crippled” would drop your value to about six-tenths of a human being. That’s why we’ve placed a non-disabled kid in a vintage wheelchair, told him to hang his head in shame, and put his photo on the above poster.

Being disabled is absolutely the worst thing we could think of. The worst combination of fear and shame imaginable.

Worse than running over a toddler. Worse than doing time for vehicular manslaughter. Worse than being dogged by a felony record. Hell, worse than death itself.
So the next time you text while driving because you figure ending up in a coffin doesn’t sound so bad, remember: you could end up in a wheelchair instead.

For more satire in the name of social justice, visit 

Monday, May 16, 2016

UNIVISION PRAISES PLUS URBIA DESIGN'S VISION FOR CALLE OCHO



EN ESPANOL

A cada uno de sus costados, la Calle Ocho está bordeada por gruesos edificios con forma de cajas: gasolineras, tiendas de empeño, ferreterías, supermercados y la ocasional panadería cubana ofreciendo cafecito, croquetas y pastelitos.

La calle es sede de varios íconos culturales: bares de jazz como Hoy Como Ayer y Ball and Chain, así como Versailles, el restaurante cubano favorito de todos.

Alrededor de la 15 Avenida los turistas salen de autobuses para echar un vistazo al Parque del Dominó, esperando ver a los viejitos exiliados cubanos insultándose con malas palabras y riendo mientras juegan.

Cerca queda el Tower Theater, un excelente ejemplo del estilo Art Deco de arquitectura, donde los inmigrantes cubanos antes iban a ver películas estadounidenses.

http://www.univision.com/noticias/citylab-arquitectura/el-rediseno-que-necesita-el-corazon-de-la-pequena-habana

Thursday, May 12, 2016

To Anyone Else Who Must Accept a Life of Chronic Pain

FROM THE MIGHTY -- We face disability, disease and mental illness together




By Heidi Johnson-Wright

I live each day with a rotten reality: I will have pain every waking moment until the day I die.
Until they put me in the crematory and reduce me to a five-pound cardboard box of ashes, I will always be in pain. I’ve known this for a long time, but somehow putting it on paper makes it more real. And a little more frightening.

Rheumatoid arthritis (RA) cleaned my clock — plain and simple. When it made its arrival my fourth grade year, my disease spread like wildfire, decimating joints from head to toe. By the time I graduated from high school, I had both shoulders and both hips replaced. Both ankles were permanently fused in place. My hands and feet were destroyed.

From the moment of my diagnosis, I battled not just physical pain but also anxiety and depression. I didn’t know that’s what my emotional suffering was called, or that it was linked to fear of my own mortality and anguish at my body’s disintegration. But I certainly understood what it meant to live in a constant state of fear. Even everyday things like meeting new people made me sick with dread. My finger joints were swollen and inflamed. If someone grabbed my hand to shake it, my knees nearly buckled from the pain. My stomach knotted when I knew I had to climb stairs, taxing my already painful knees and ankles. I held a bottomless pit of despair inside me which I tried time and time again to blot out.

The domino effect of the RA’s destruction was more than any kid could be expected to cope with. Yet no one — no medical professional of any stripe — ever suggested to my parents that I could benefit from talk therapy or even pain management skills. That’s astonishing, given that folks in the health professions have long been aware that living with chronic pain makes someone susceptible to depression.

The reality is that virtually all forms of arthritis bring chronic pain and are incurable. They attack, destroy and stay put until they’re good and ready to depart. My disease departed when I was in my early 20s. Although I’ve not had any active RA since Wham! was in the Billboard Hot 100, the damage to my natural joints has been devastating and permanent. I still have to depend on those joints every day to pull on a shirt, walk, stand up from a chair — anything requiring movement. Even the gentlest of activity taxes joints that have been weakened from the damage done.

It’s like a wooden house whose interior support beams have been chewed through by termites. The termite swarm may depart, never to return. Yet at any time, the slightest stress on the damaged and weakened support beams may cause parts of the house to come crashing down.

Most days, my pain is like white noise. It remains at a level which I can mostly tune out. But some days the pain ratchets up. Like Glenn Close’s character in “Fatal Attraction,” it will not be ignored.

I do not write this to elicit pity. I write it out of solidarity with anyone else who must live each day with a painful, irreversible reality. I write it for those who wake up each day, put their feet on the floor and move forward even when they’d rather crawl back in bed and pull the covers over their heads. I write it for those who must accept what seems like cannot be accepted.

You are stronger than you could ever imagine.

http://themighty.com/2016/04/accepting-life-of-chronic-pain-from-rheumatoid-arthritis/

Monday, May 9, 2016

Real, Vibrant and Not-to-be-Ignored

EDUCATION OF ALL CHLDREN


By Heidi Johnson-Wright

2015 marked the 40th anniversary of the Education for All Handicapped Children Act (EHA), landmark federal civil rights legislation that allows kids with disabilities to sit in school desks alongside non-disabled students. Before 1975, the U.S. was a nation in which the educational needs of eight million “handicapped children” were not being met, with one million such children excluded entirely from the public school system.

The most severely disabled children were forbidden by law to pass through the schoolhouse doors. Among the other seven million, most attended segregated schools with very rudimentary curricula or were sequestered within segregated classrooms. Most were tasked with just busy work and training for menial jobs. 

Like the Sex Pistols sang in “God Save the Queen”: No future, no future, no future for you.

The EHA later evolved into the Individuals with Disabilities Education Act (IDEA), which defines kids eligible for services as those who have “a disability that adversely affects academic performance.” Of the eight million children mentioned in the EHA, it’s likely that many had orthopedic that didn’t impair the ability to learn but pushed them into segregated settings. Today, approximately 95 percent of kids with disabilities are attending regular public schools. About two-thirds pass school days alongside their non-disabled peers.

But don’t uncork the champagne just yet.

While U.S. law creates a framework for an integrated setting, good intentions don’t always add up to a meaningful education. Parents, students, school administrators and teachers must still shape a free appropriate public education in the least restrictive environment.

Intrigued?  Check out Pentimento magazine at: http://www.pentimentomag.org/issue-6-toc

My non-fiction memoir piece, “Crip Cargo,” appears in the current issue of this literary magazine for the disability community. An accessible, balanced platform where a piece about a promising future can sit next to a glimpse into a bleaker reality. Readers look together into the dark and the light and connect to both. To see and see again. To see beyond disability.

Don’t expect the usual mass media-crafted tropes of super-crip, inspirational gimp or pathetic victim. The pieces relate indignities, triumphs, and moments of silent or not-so-silent joy. At the heart of any education lies communication. Telling our stories makes us real, vibrant and not-to-be-ignored. 

Friday, May 6, 2016

OCEAN DRIVE LOVES WYNWOOD GARDEN


 PLUS URBIA DESIGN'S ARTISTIC TOUCH PRAISED BY GOLDMAN PROPERTIES

OCEAN DRIVE MAGAZINE EXCERPT:

The evolution has already started at Goldman Properties, which recently expanded the Wynwood Walls by purchasing an adjacent property dubbed Wynwood Garden.

While the expansion allows for larger events—like the concert series that Goldman Srebnick is starting in May or high-profile weddings (and nightlife impresario David Grutman’s recent engagement)— it also provides room for more street art, which is the foundation of the development.

CLICK HERE FOR FULL OCEAN DRIVE STORY

Saturday, April 30, 2016

To the Caregivers I’ve Known

FROM THE EARTHBOUND TOMBOY FILES OF HEIDI-JOHNSON-WRIGHT

 
by Heidi Johnson-Wright
 
Being cared for by others over your life should be a reverse bell curve. You start out requiring a lot of help, gradually need less and less, live decades independently, then your needs return toward life’s end.
 
Once upon a time, I was in lock step with this blueprint of how we insist normal life should be. I was an eight-year old who rode a bike and climbed trees, a healthy third-grader who had mastered most personal care chores. Then rheumatoid arthritis fell from the sky like a white-hot shower of napalm. In a matter of months, dressing and grooming and cutting up food became monumental tasks. From then on, I have had to depend on caregivers for many simple and highly personal tasks.
 
I have had many caregivers thus far in life: a few dedicated family members who have done it for free and the vast majority who have been paid for their services. Sometimes family helps out of love and other times – let’s be honest – out of moral obligation. We then assume that the ones who get paid see dollars as their goal when sometimes they also stick around for the personal connection. They develop something of an emotional investment in the client.
 
Much has been studied and written about the burdens of caregiving for disabled offspring or how the sandwich generation are ground down to a nub by their obligations towards both kids and elders. All of it is valid and worthy of discussion. But what about the recipients of care, especially us adults who are supposed to be able to wash our own hair and pare our own nails?
 
When I was a teenager, I felt especially self-conscious. I was less concerned about needing help than I was sensitive to my personal appearance. I passively accepted my gimpdom but felt embarrassed to get naked in front of strangers. 
 
When I started college at 17, I hired my first personal care attendant. I was anxious about the arrangement. Could I depend on her to get me up and ready so I wouldn’t miss my van ride to class? We quickly built a relationship of trust. I soon felt a bond with Lexie, the punk poetess who would be my caregiver and roll model throughout my four years of undergrad.
 
One time, Lexie was stricken with a devastating flu and bout of laryngitis. She was much too sick to work, so I temporarily hired an attendant already employed by another girl in my dorm. The sub was pleasant and punctual and resembled Dick Butkus in bibbed overalls.
 
She’d never heard of Captain Sensible nor seen I Am Curious (Yellow.) I soon developed an irrational dislike for the poor woman though I tried not to show it. I deeply missed Lexie and fretted about her health.
 
Finally, after two weeks, my door swung open one morning.
I thanked God Lexie – Sally Bowles to my Heidi of the Swiss Alps -- had been returned to me in fine fettle.
 
Lexie was always dependable, but other paid caregivers were not. As I got older, I realized I would much rather have an inexperienced attendant who is reliable, personable and shows initiative than an experienced one who is always late or I can’t bond with.
 
Family caregivers can be wonderful because of the memories and private jokes you share. If they love and accept you, all the better. But I have always felt a greater indebtedness to family members than those I pay. That indebtedness can eat at your heart.
 
A loved one can hug me and tell me I’m not a burden, but the truth is, I sometimes feel like one. I love the concept of respite care but I also feel a sense of shame that it’s needed in the first place. Truth is, the simple tasks of my daily existence can weigh down those dear to me, can pull them down into depression and exhaustion. That can be very tough to live with.
 
Perhaps we could take a page from the book of countries who are – gasp! – a tad more democratic socialist. Places where tax dollars fund basic attendant care for folks with disabilities so the need for respite care never arises.
 
Once we accept disability is often a natural and expected part of the human condition, then maybe we can forge a society that cares for all.