UNIVERSAL DESIGN AND INCLUSIVITY

...will you let me in the dang door?

By Heidi Johnson-Wright

Some pioneers aren’t household names -- yet. You may not have heard of Ron Mace. He was an architect, product designer and educator whose approach to design challenged convention. He envisioned a world that was more user-friendly to everyone, and coined the term “universal design.”

Universal design is about making products and built environments that are both aesthetically pleasing and welcoming to all. Not just people with disabilities and older folks with mobility issues, but also speakers of other languages; parents pushing strollers; pedestrians on foot, bicycle or alternative mobility device; or people with temporary disabilities or recovering from injuries. Its core value is creating environments that can be used by a wide range of users, regardless of ability.

To boil it down to one word: inclusivity.

Sounds positive and egalitarian, right? Well, not to some design professionals out there.

There are some folks who believe universal design is overly restrictive, unfair – even downright dangerous. They say it’s too limiting, that it caters to the few at a cost to the majority. They believe that if universal design concepts are incorporated into building codes, we’ll end up with a world filled with ugly structures and streetscapes, a world where creativity is quashed by some sort of misguided attempt to include all members of society.

Perhaps they have a point. I mean, building and fire code requirements about plumbing and electricity and exits are pretty darn restrictive. We would probably have a much more attractive and inviting built environment if raw sewage could simply be piped out to open ditches. Or if wiring could be done any which way – fire hazards be damned -- and paths of egress took a back seat to creative design.

And why is access for people who aren’t five feet nine, 175 pounds and athletic so darned important anyway? Why should we care if people in wheelchairs can’t get to a workplace to earn a paycheck because there are steps at the entrance? What does it matter to the global economy if products are designed counter-intuitively, making them unmarketable where people don’t all speak the same language? Does it really make a difference if people can’t age in place in their homes or communities because they can no longer climb stairs?

I’ll let you be the judge.  

http://earthboundtomboy.blogspot.com

 

 

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THE WORLD NEEDS MORE HEROES

By Heidi Johnson-Wright

We all need heroes, or heroines. The late Harriet McBryde Johnson is one of mine.

McBryde Johnson was a wheelchair user because of the complications of a neuromuscular disease. Mobility and the everyday tasks of life were no small struggle for her.

Like all people with disabilities – not just the inspirational, determined ones of popular media depictions – she wanted to make a life for herself. The path she chose was to earn both a law degree and a master’s degree in public administration. She practiced law and lobbied for legislation that promoted inclusivity of other people with disabilities.

McBryde Johnson was also a brilliant communicator. She wrote op-ed pieces for the New York Times as well as books. Her collection of memoir essays, Too Late to Die Young: Nearly True Tales from a Life, is captivating. Her observations on life lived with a disability are often hilarious, poignant and insightful, all at the same time.

For me, the highest accomplishment of her talents as a communicator was her debate with Peter Singer. The debate was on the Princeton philosophy professor’s argument that parents and doctors should legally be allowed to euthanize newborn babies who have severe disabilities or lack higher brain functions. I don’t think I need to tell you which side of the issue McBryde Johnson was on.

Singer contended that euthanasia in such cases is justifiable because newborns, like animals, are neither self-conscious nor rational beings. McBryde Johnson homed in on Singer’s false assumption that the presence or absence of a disability automatically predicts quality of life. She saw that his argument was predicated on the prejudices of ableism.

Simply put: people without disabilities are inherently superior to those with disabilities. Absence of a disability is the norm, the gold standard for human life. If you don’t meet the standard, your life -- and you – are of lesser value. It’s the same paradigm found in bigoted beliefs held against other marginalized groups.

We’re the standard; you are not. You must strive to be like us and if you cannot, then go away. Stay with your own kind and out of sight. Or in the case of Singer’s argument: die at the hands of the majority -- literally.

If you feel uncomfortable just now reading this -- perhaps even queasy – I encourage you to read McBryde Johnson’s account of her debate with Singer. It ran in the New York Times as Unspeakable Conversations: http://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html

Thank you, Harriet, for giving all of us a voice.

http://earthboundtomboy.blogspot.com/

CAREGIVING: IT’S NOT JUST FOR KOOKS

TRUE TALES BY THE AUTHOR OF THE UPCOMING MEMOIR: EARTHBOUND TOMBOY

By Heidi Johnson-Wright

I’ve been an employer since I was 17 when I hired my first personal care attendant. In the intervening time – more years than I care to mention – I’ve had some very interesting experiences. And I’ve certainly learned a lot about human behavior.

Like anyone with a disability, I’ve had my share of otherwise good attendants who were chronically late. Most memorable was a quiet little mouseburger who worked for me my first year of law school. She compulsively hit her snooze alarm, often coming darn close to making me miss my morning van ride to class. When I’d finally had my fill of unnecessary stress and her excuses, I insisted she put her clock radio across the room from her bed. She looked at me as if I’d decoded the Rosetta Stone, such was her astonishment at my solution.

Many of my PCAs were young ladies, often allied med students. I typically found college kids to be energetic and motivated. They showed enthusiasm for the job, and I loved hearing their crazy stories about whack roommates and parties with techno records and plastic trash cans filled with hairy buffalo. But students can be flighty and short-sighted. I had several come on strong at first, then quickly lose enthusiasm. They decided a couple weeks in that they’d prefer waitressing, and I had to push the re-set button on the attendant search.

Eventually, I changed my approach and started seeking grown-ups. I figured they’d be more grounded and responsible. Some were; others, not so much. I hired one older lady who, after two visits, said she wanted to “job share” the position with her friend. She brought the other woman – unannounced – with her to my house and started right in on a hard sell. It seems her friend’s primary qualification was her other job as a maid for Sissi Fleitas, the buxom Spanish language TV personality. Did she think hand-laundering Sissi’s generously-sized brassieres was equivalent to showering a gimp girl?

I understand that attendants are people, too. They’ve got family problems, car trouble, migraines and bunions. I try to be flexible and understanding, but I draw the line at crazy. And I never cease to be amazed at how crazies can hold it together during a 30-minute interview, then let it all hang out once they get hired.

I had one nut job who -- five minutes into her first shift – burst forth with a torrent of religious zealotry. She quizzed me about my personal beliefs and expounded on how the artwork in my home was demonic and dangerous. I tried to stick to innocuous topics like the weather only to be told that even overcast days felt sunny to those in the Lord’s bosom. The last straw came when, while shaving my legs, God Girl caressed my shins and inquired if I wanted to “be restored.” I paid her right then and there, and told her never to return.

Looking back, I wish I’d replied: “I am restored, you knucklehead. Six months ago I was a double amputee!”

http://earthboundtomboy.blogspot.com/

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ROCKIN’ THE BOOM

 

By Heidi Johnson-Wright

I was born at the tail end of the Baby Boom, the twenty-year period of post-World War II American prosperity. In every sense of the term, I’m a boomer. In birth year, sensibilities and spirit. If you dig what I’m saying, then let me hear you say “right on!”

• When I hear the word “news,” my first thought (before I remember what year it is) is Cronkite or Chancellor or Reasoner -- not Twitter.
• My personal stamp of approval is always given with the word “cool.” “Awesome” is a descriptor of the powers of a supreme being.
• The drama of the Olympics will forever be associated in my mind with Cold War rivalries – and LeRoy Neiman paintings.
• If you watch America’s Got Talent and you’ve never heard of The Gong Show, then our generation gap rivals the Grand Canyon.
• Jeans that don’t flare at the bottom are called “straight leg,” not “skinny.”
• Classic rock is simply rock.
• Watergate and Wacky Packs profoundly shaped the person I am today.
• When I turn on the TV, I sometimes forget – for an instant – that there are more than three major networks and a couple of cheesy UHF stations.
• I know all the words to Coke’s “I’d Like to Teach the World to Sing” and the Burger King jingle that starts “Two hundred million people…”
• I treasured the moon rover toy I got from a box of Cheerios, I loved the chemical taste of chocolate fudge Space Food Sticks and I remember where I was when Sky Lab fell.
• Being a mall rat meant checking out the pet rocks, posters and naughty board games at Spencer Gifts, buying 45s at Record & Tape Outlet and browsing the sexy dresses at Merry-Go-Round.
• I still believe that the U.S. will be going metric in 1980.
• Mood rings, macramé owls and MOR radio – need I say more?
  http://earthboundtomboy.blogspot.com 

THINGS PROVOCATIVE, EDGY AND PROFANE

THINGS PROVOCATIVE, EDGY AND PROFANE

By Heidi Johnson-Wright

You might call me a cripple or a freak.  Though if you’re going to use epithets, I’d prefer “gimp girl.”

It’s pejorative. But since I both struggle to walk and have ovaries, it’s true.  Not “True” as in the Spandau Ballet song, but “true” as in truth. The kind of truth that -- if you own it -- will set you free. 

I’m ready to own my particular truth. I’m ready to be set free.

Oh, wait a minute. Perhaps you’re thinking I need to be set free because I’m a prisoner in my own body. I can’t water ski or kick box, so my life is devoid of all meaning. May I point out that such a thought stems from the assumption that being able-bodied is always superior to being disabled? That’s a very progressive way of thinking, provided you’re living in the Middle Ages.

OK, that was rather bitchy of me. Sorry. Let me back up and clarify a few things. I’ll try to be more polite.

I don’t want to be anyone’s inspiration. Don’t pat me on the head or gaze at me with pity.

And for heaven’s sake, if you pass me on the street, don’t hand me dollar bills. (I’m not a stripper.)

I don’t exist on this planet primarily to suffer, and my suffering isn’t about making you feel more content with your own situation. None of this “I felt sad because I had no shoes until I met a man who had no feet” nonsense.

If you’re still expecting heart-warming tales about a chick who triumphed over a terrible disease and grew up determined to find a cure, you’ve stumbled upon the wrong blog. (Forget medical research. I wanted to grow up to be Joan Jett.)

But if you seek out things provocative, edgy and profane, welcome to EarthBound TomBoy.

Follow EarthBound TomBoy at http://earthboundtomboy.blogspot.com 

 

MEDELLIN MAGIC -- EXPLORING COLOMBIA'S REMOTE METROPOLIS 8

MEDELLIN: SEE IT LIKE A NATIVE, SLEEP CHEAP AT PIERS' PLACE IN LA LAURELES

To stay in Medellin for less than $25 US per night, go to AirBnB and search for Laurales Estadio 23 (Calle 46 #70A) and email Piers.

Pros:

Tremendous price.

Laureles is safe, quiet, secure.

Apartment is very short walk to Estadio station for dirt cheap metro train access to entire city.

Nightlife, restaurants, street vendors and true flavor of Medellin within crawling distance along famed La Setanta but somehow, the apartment is very quiet -- so best of both worlds location.

Cheap nearby eats.
Crawling distance of the stadium if you want to catch a soccer, errr, futbol game.

Bathroom/shower kept super clean.

Funky blend of longer term and short term guests at this funky single family house.

Full kitchen plus washer to use for free.

Balcony to catch the mountain breezes while drinking in the sounds of a real neighborhood.

Taxi ride to centro about 6 mil COP (about 3 bucks US) if you're feeling too lazy to walk 6 short blocks to metro station.

Little market in bottom of house directly across the street, open roughly 7 a.m. to 9 p.m. daily -- has great prices and everything you need such as snacks, beer, soda, bottled water (though Medellin's is 100 safe out of the tap).

Location is in a real middle to upper middle class neighborhood -- you will be walking past everyday people, not tourists. Can't stress enough how important it is to stay local.

Piers saved me at least 60 US round trip by suggesting I take collective bus from airport to center (San Diego), then taxi to his place.

A taxi from airport will cost at least $35 US one way and gets you there no faster than the Piers suggested route, which costs only a couple bucks -- and exposes you to local culture that takes place on a 45 minute bus ride through the countryside and into the city.

MEDELLIN MAGIC -- EXPLORING COLOMBIA'S REMOTE METROPOLIS 7

MEDELLIN: THE METROCABLE DOES MORE FOR TOURISTS
THAN SIMPLY TRANSPORTING THEM TO PARQUE ARVI

On the way up the mountain, don't just transfer from one cable car station to the next on the way to the mountaintop Arvi Park.

Get out in Comuna Santo Domingo and take a walk around.

This used to be an unthinkable thing.

Not that long ago, the area was beyond dangerous.

It's certainly very, very rough around the edges.

But it represents the real Medellin.

There are more folks scratching out a living in the makeshift bars, shops, restaurants, barber shops and markets of Santo Domingo then there are millionaires in a walled and guarded enclave in El Poblado.

Even in the poverty-challenged hillside comunas, I experienced an amazing vibrancy of life and a resolve to create housing, shops and more out of basic materials.