THE POWER OF WORDS

I’ve never been a fan of terms like “handi-capable,” “differently-abled,” and “special” when it comes to describing people with disabilities. They come off as trivializing, and make it sound like folks can’t deal honestly with their disabilities. I always imagine such terms were coined by someone who has never lived with a disability and dots each letter “i” with a tiny heart.

 

I dislike the word “handicapped” but I’m cool with the word “disabled.” And I’m a fan of people-first language. For those unfamiliar with the term, PFL is a way of speaking and referring to people with disabilities that respects them as human beings, rather than dehumanizes them. It emphasizes the person first and the disability, second. A man with a disability, not a disabled man. A woman who is blind, not a blind woman.

 

PFL represents more respectful, accurate ways of communicating. People with disabilities are not their diagnoses or disabilities; they are people, first.

 

I also cringe when I see disability stereotypes trotted out by the media. You’ve probably seen them yourself. Putting the person with a disability on a pedestal. Depicting a person with a disability as dependent or as an object of pity. Representing the person as having special talents or abilities because of his or her disability, i.e. the blind person who’s musically gifted.

 

I could live a long, happy life without ever again reading one more tear-jerking human interest story about incurable diseases or severe injuries. I’d like to see more stories that focus on issues of quality of life for folks who are disabled. Issues such as accessible transportation, housing, employment opportunities and social interaction.

 

Disability is a natural part of the human condition. The folks with disabilities I’ve met (and myself, too) would rather be known for the things that reflect on their character or their essence as human beings. They would rather be known as a devoted parent or a successful attorney or an amateur gourmet chef rather than as someone with a brace on their leg or someone who wears hearing aids.

 

So, please: no more heroic overachievers or long-suffering saints. No more cutesy terms that set the teeth on edge. No more stigmatizing words that leave a sting.

 

Just people – like everyone else.

CAREGIVING: IT’S NOT JUST FOR KOOKS

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!”

THE WORLD NEEDS MORE HEROES

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.

LIFE IS A BULLRING

Inspiration and strength sometimes come from unexpected places: the hues of a twilight sky, a silly escapade, a song lyric.

My husband and I were on a trip to Spain when we visited the Andalusian town of Ronda. It’s a lovely spot suspended over a canyon with three iconic bridges. Madonna fans will recall it depicted in gorgeous sepia tones in the “Take a Bow” video.

One afternoon, my husband and I dined at a lovely café, leisurely enjoying lunch and two bottles of Rioja. Next door was the bullring. No corrida de toros that day, but tours were available. We couldn’t resist.

After a pass through the arena’s small museum, we explored the field. Perhaps it was the joy of a pleasant day or the wine or both. I found myself possessed by the spirits of matadors past. I stood up and begin swooping my red jacket like a cape, daring my wheelchair to come at me, its handles like the horns of a bull. My husband began shooting photos as I posed, spurred on by the shouts of an imaginary crowd.

Perhaps it was silly, merely the momentary playfulness of a tipsy woman on vacation. But when we returned home, and I reviewed the pictures, I recalled the lyrics of a song I love. It was “Jean the Birdman,” by English singer-songwriter David Sylvian:

Life is a bullring

For taking risks and flouting rules

Who needs a safety net

The world is open wide

Just look out for card sharks

And the danger signs

I printed out one of my husband’s photos with the lyrics typed below. I posted it on my office wall.

On days when my pain flares or I’m anxious or things are just not going well, I look at the photo.

If only in my mind’s eye, I‘m back in Ronda -- clad in a bullfighter’s spectacular traje de luz – and life seems full of possibilities and adventure.  

ROCKIN’ THE BOOM

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?

EVIL WHEELCHAIR: DESTROYER OF LIVES

Ah, the wheelchair – that sad symbol of failure and loss. A 25-pound contraption of vinyl, metal and rubber that seems to have an almost mystical power to break the human spirit.

You’ve heard the comments.

“That poor man, he’s stuck in a wheelchair.”

“She’s got a handicap that’s left her wheelchair-bound.”

“What a shame – confined to a wheelchair.”

I know of what I speak on a personal level. I’ve been confined to my prison on wheels for 30-plus years. And let me tell you, it’s no picnic.

Using a power wheelchair is certainly a burden. When I got my first one at 18, I realized the consequences right away. It forced me to get around on my own, and I had no choice but to go away to college. Sadly, being able to get out of my house meant I had to meet people, some of whom became dear friends and one of whom became my beloved husband. I even had to get an education.

As if that weren’t bad enough, the chair’s powers sentenced me to getting my own apartment and going away to law school. Three years I spent in that university! Three years of education that allowed me to pass the bar exam on the first try! All due to the mobility caused by that damn chair.

Getting around independently has even more drawbacks. It’s forced me to have a successful career I’m proud of, and allowed my husband and me to take vacations. Wandering the white hilltop villages of southern Spain, exploring the Tuscan countryside, taking in plays on Broadway and London’s West End – all enabled by that blasted chair! Why can’t it just leave me alone?

But at least my days are brightened by kind strangers with pity in their eyes who hand me dollar bills. Why, those extra two or three sawbucks a month sure do help pay the mortgage. And I never grow tired of hearing folks shout out: “Slow down, little lady. You’re gonna get a speeding ticket!” Why, just last week I heard the 5,741^st person say that very-same phrase to me and I burst out laughing. Noel Coward and Dorothy Parker had nothing on that clever wag!

I have to hold onto these meager bright moments in my life. Otherwise, the misery of my incarceration in my wheelchair would truly be too much to bear. If only I had no chair to take me around and could simply remain in my house each and every day. I imagine a life spent in front of the TV clad in T-shirts and sweatpants, watching Jerry Springer and eating Cheez Doodles. Ah, but it’s only a dream…

But I vow to accept my fate. I shall remain strong. What choice do I have in this miserable prison on wheels?

UNIVERSAL DESIGN AND INCLUSIVITY, or will you let me in the dang door?

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.  

STEP RIGHT UP AND ASK THE GIMP GIRL

My husband and I were in Mallory Square, gazing out at the water. We’d gathered with the rest of the crowd to enjoy the evening sunset celebration. The light splashed across the sky was changing colors minute by minute: topaz and tangerine, hot pink and periwinkle, scarlet and cinnabar. We held hands and smiled, enjoying the remaining minutes of a leisurely day spent in Key West.

Just moments before we hoped to spot the elusive green flash, a woman came up to us out of the crowd. I’d never seen her before in my life, and from the look on my husband’s face, it was clear he didn’t know her, either.

“I’ve been watching you from my window,” she said, pointing to a nearby hotel. “You’ve been standing up and also sitting in your wheelchair.”

“Huh?” I thought, startled from my reverie, then instantly realizing what was happening. She was one of those insensitive knuckleheads who felt it was her God-given right to pepper me with questions.

As if on cue, she asked me why I use a wheelchair, how long I’d been using one and why I sometimes stand and walk.

“I have arthritis and use a wheelchair to get around, but sometimes I need to stand and stretch,” I replied, hoping that would satisfy her curiosity and she would turn around and depart.

She did not. She’d gotten her foot in the door, and burst forth with another round of highly personal questions about my disability.

My face flushed hot and for an instant, I mentally debated – but rejected – the idea of kicking her in the shins. Instead, I quietly turned away from her and back toward the water. Mercifully, she got the message and walked away.

The light on the water was still breathtaking, but the magic was gone.  I was shaking with anger but unsure of whom I was angrier with: my interrogator or myself for even answering one of her questions. My husband was equally disgusted. But we didn’t want to end the day on a sour note, so we shook it off.

The next day when I was more introspective and less irate, I thought about what had happened. It was hardly the first time that a total stranger had treated me this way, yet it left me just as puzzled.

Why do some otherwise normal people think it’s OK to behave so brazenly? Why do they see folks with disabilities as a sort of “community property,” as walking or rolling encyclopedias they can demand answers from whenever they please? Why is this sort of behavior acceptable to them, yet they would be appalled – and justifiably so – at the thought of asking an African American they’d never met before intimate questions about his or her racial identity or experiences with bigotry.

Some people just don’t get it, and they probably never will. So I’ve resolved to respond the following way to the next dolt who dares to interrogate me:

“Which STDs have you had?  Why is your credit score so low? When are you going to take off a few pounds?”

When I see a flabbergasted expression and hear nothing but crickets, I’ll wrap it up this way:

“Are you shocked by such intimate questions from a complete stranger? Now you know how I feel.”