Piano Lessons, Pit Vipers and X-ray Specs

I began learning to play the piano in elementary school at the insistence of my parents. I found it a miserable chore. My sister and I would dutifully take our piano lessons each Saturday morning. I’m not sure whose bright idea it was, but our lessons commenced at 8am, and it was a 20-minute drive to get there. Sleeping in on Saturday mornings became a mere fantasy.

Our teacher was Mrs. S. She lived with her mother in an old, musty-smelling house near the lake. That her mother was still alive was inconceivable, given that Mrs. S herself was older than dirt. She was stoop shouldered and slow moving. Her face bore a distinct resemblance to the faces of the folk art dolls my mom carved from apples and set out to dry in the sun. On days when I was less charitable of spirit, I would describe her visage as, well, simian.

Mrs. S’s voice was thin and reedy and came forth from her throat like a long, silvery thread. If you went to Egypt’s Valley of the Kings and dug up the mummy of Nefertiti, opened her tomb, unwrapped her bandages and chanted an incantation that could make her speak, the voice that came forth just before her head collapsed into a cloud of dust would probably sound like Mrs. S.

Mrs. S never answered the door when we arrived at 8am each Saturday. It was always a man at the door whose identity remains unclear to me to this very day. I would beg my sister to have my lesson at 8:30 so I could make her go first while I sat on a wooden bench with a braided seat cover in the foyer, reading Mrs. S’s trove of comic books. Laura never hesitated to pull older sister rank on me, so I perpetually had the 8am slot.

Mrs. S neither liked nor trusted her students. She did not bother to climb out of her sarcophagus until she actually heard us arrive. I pictured her putting a giant, antique ear horn to her head, letting out a sigh, then getting out of bed. I had to sit on the piano bench for another 15-20 minutes waiting for her, studying precisely where the wallpaper pattern began repeating.

As if that weren’t bad enough, Mrs. S had the disposition of an irritated pit viper. She barely greeted me before shuffling over to her chair beside the piano bench. Once I began playing the pieces she’d given me to work on, the least little thing set her off: the clumsy grace note, the missed key change, piano instead of pianissimo. She was a shriveled, gnarled mummy who could utter only scoldings. Worst of all, she gave letter grades for each lesson, and appeared to savor the withholding of praise and approval. Had my parents purposefully searched far and wide to find a teacher who could turn off a child to playing the piano, they could not have made a better choice. Bravo!

I worried myself sick until the lesson was over and the grade was finally doled out. A bad grade (anything below an A-) would result in a second scolding at home. If I didn’t tell my parents how my lesson went, my sister would be sure to fill them in.

Once Mrs. S allowed me to escape from her lair, I traded places with Laura on the bench in the foyer. Now it was my turn to relax and thumb through the comic books that Mrs. S must have bought at a rummage sale years before. I didn’t read them for the comics themselves. Was there ever a Caspar the Ghost storyline that wasn’t lame? Who could possibly identify with Richie Rich and Scrooge McDuck?

No, I read them for the ads.

I was fascinated with two different types of ads. The first type was the more obvious: ads for practical joke novelties and “spy” gadgets. I never actually sent away for a pack of exploding cigarettes or chewing gum that smells like farts, but I got plenty of joy imagining who I’d torment with them. Even better, I pictured myself in a tableau of Cold War intrigue, secretly photographing my sister’s diary with a mini spy camera or staring through her boyfriend’s clothing with a pair of X-ray specs.

The other type of ad was for posters and accessories that gave me a glimpse into a world utterly despised by my parents. They considered anything that even vaguely promoted drug use or anti-establishment/hippie culture to be Satanic. I was endlessly fascinated by black light and Op Art posters and dreamed of papering my room with them. In elementary school, I wasn’t really into the Doors or Jimi Hendrix. But I was pretty sure I could send my God and country, Paul Harvey-loving dad into orbit if I sewed a patch on my jeans that said: “War is not healthy for children and other living things."

I’d been taking lessons from Mrs. S for about a year when my mom told me that Mrs. S was very ill and in the hospital. She’d apparently had a stroke. (Or a legion of carnivorous scarab beetles had finally eaten through her sarcophagus.) I wouldn’t be going to piano lessons for several weeks. Pity.

About three weeks later, my mom said that Mrs. S had been called home. I figured that either meant heaven or Luxor. Half of me felt joy, and the other half of me – the hard-working, Midwestern, Protestant half – felt guilty that I felt joy. I kept all of my feelings to myself. Nothing could set off my parents faster than even the mere perception that I was being disrespectful to an adult. (Or to the memory of one.) 

Ten-plus years later, my mom, sister and I were taking a stroll down memory lane. Mrs. S’s name came up, and I said that the nasty, old harpy should not have been allowed in the same room with children, let alone giving them piano lessons. As if on cue, my mom leapt to Mrs. S’s defense, citing her Julliard pedigree. As if being formally educated makes one a decent person.

My mom said Mrs. S shouldn’t be judged so harshly, especially given the gruesome circumstances of her death.

“Gruesome? What’s so gruesome about a stroke?” I asked.

This elicited howls of laughter from my sister.

“Oh, my God, after all these years – you never told her?” she asked my mom.

My mom shook her head.

“Heidi, you goofball,” said Laura, “Mrs. S went down to her basement, stood on a chair, stuck her head in a noose, and shot herself! She was really depressed over her mother’s death -- or maybe she just couldn’t take your playing!” 

Giant Cosmic Crap Wheelchair Van

I think it was the day I drove through a tropical thunderstorm with my window down that I knew. I didn’t want buckets of rain soaking me to the skin as I crossed the McArthur Causeway, but I had to see in order to drive. This required sticking my head out the window because my windshield wipers had failed. And they picked a mighty inconvenient time to go on the fritz.  

 

Something in my gut told me that my $60,000+ customized wheelchair-accessible was a lemon. But it wasn’t always like that. The first couple years were magical.

 

I remember my joy on the day I picked it up. Finally, the two and half years I’d spent convincing the state vocational rehab folks I needed the van paid off. They agreed that -- as a power wheelchair user -- I needed the van to stay employed. They agreed to pay for the customized lift, wheelchair lock-down system and driver’s seat if my husband and I bought the Dodge Grand Caravan. In addition, the state got to select the van conversion provider.

 

This left me with little choice in the process, but that was fine with me. I simply couldn’t go on driving a Chevy Cavalier that could not accommodate my power chair. I had to leave the wheelchair at my office, which meant I had no chair to use otherwise. Any place I needed to go outside the office left me no choice but to hobble around on crutches. I could only walk short distances and couldn’t carry anything with me. It was an arrangement that had become unworkable.

 

Those first couple years with the van, I felt like a 16-year old who’d just gotten her license. Gone were the days when I sweated going to off-site meetings and trainings for work. Now that I could transport my chair in the van, a whole new world had opened up for me.  On my off time, I went to movies, poetry readings, malls and restaurants – things impossible for me in the past. I could grocery shop, pick up dry cleaning and run to the drugstore by myself, tasks I desperately wanted to contribute to ease my husband’s caregiver burden.

 

All was smooth sailing until we moved from Ohio to Miami. Then it was as if some evil cosmic force awoke and took a humongous crap on me and my van.  A huge, stinky crap that coated the outside and inside, smeared all over the Dodge factory parts along with the after-market conversion parts. Let me count the ways:

 

• The customized and very pricey automatic door that opened to deploy the ramp broke like 800 times, often trapping me in the van. (Okay, maybe it was only 80 times.)
• An improper sealing job at the factory allowed water inside resulting in a stinky mildew bloom in the upholstery.
• The ramp motor died twice.
• Both the driver’s and passenger’s windows dropped down into the doors without warning.
• The left turn signal came and went as it pleased.
• The fuel pump died.
• The relay switch that powered the sliding door’s remote control worked some days but not others.
• The van frequently overheated, overflowing the radiator.
• The customized electronics that allowed me to switch gears at the touch of a button got so out of whack that I had to take the bus to work while my van was in the shop – for six weeks.
• The custom driver’s seat broke a gear and wouldn’t move.
• The radio died on my birthday in 2001: Sept. 11.
• The fuel line went into vapor lock numerous times, utterly disabling the van. Sometimes it mysteriously fixed itself after the van burst forth with a giant farting backfire.
• A young man on a 10-speed heading to his South Beach waitering job slammed into the van’s passenger side, knocking off a protective underside panel.
• Two different drivers backed into me.   
• Did I mention Dodge issued two recalls requiring significant repairs?

 

Now that I’m on my second van, I think back on that big, purple hunk of junk. There were times I wanted to put a concrete block on the accelerator and let that van fly into Biscayne Bay. I still hold it responsible for most of my gray hairs.

 

Yet it gave me freedom in life that I could never take for granted. I’m forever grateful, gray hairs and all.

  

GIMP GIRLS AND CRIP CHICKS RULE

I came of age in the late 1970s, when the girls in my high school sported ultra-shiny lip gloss and perfectly feathered hair. They wanted to be like Farrah Fawcett or Margaux Hemingway, pop culture “it girls” who danced the night away at Studio 54.

 

I wanted my share of fun, too. But I couldn’t imagine myself doing the bump or the hustle with a partner on a dance floor. The arthritis had turned my body against itself. Instead of grinding with a hot guy in a club, my joints were grinding bone on bone.

 

I began using a wheelchair for mobility. And I realized that Charlie had no gimp-girl Angels. Faberge wanted no crip chicks in its fragrance ads. It was painfully evident that no women in popular culture looked anything like me.

 

The only wheelchair user I saw depicted in popular media was Ironside, the character Raymond Burr portrayed in the TV cop drama. A former detective forced into retirement after a shooting renders him paraplegic, he becomes a special police consultant who solves crimes in a wheelchair.

 

Loads of action! Snappy dialogue! Wheelchair jokes!

 

I looked around and saw no positive female role models in wheelchairs. No crip chick characters on TV or in the movies. No gimp girl heroines in books or narrators in music or poetry. Didn’t do a whole lot for my adolescent female self-image.

 

Decades later, pop culture hasn’t made as much disability-positive progress as I’d like. But things are undoubtedly better. Case in point: my friend, Stephanie Woodward is in a Honey Maid graham cracker commercial.

 

Honey Maid has launched an ad campaign that features inclusive depictions of American families -- same-sex couples, mixed-race and blended and immigrant families. Stephanie and her niece are featured in a spot showing a disabled aunt and niece making apple and cheddar melts together on their graham crackers.

 

Stephanie is a disability rights lawyer and activist who is currently director of advocacy at The Center for Disability Rights. She signed on for the project, Honey Maid says, because she—and many in the disabled community—want real disabled people featured on TV and in the media, not actors playing disabled people.

 

Check out the ad at: https://www.youtube.com/watch?v=d4TncEFoI3Q&feature=player_embedded

DEAR GRANDFATHER: PLEASE LET GIMPS IN THE DOOR

As a wheelchair-using gimp girl, I sometimes hear folks say the reason a place is not accessible is because it’s historic. Statements like “It’s one of those older buildings constructed under standards in force years ago.”

What they mean is it was built back when gimps were safely tucked away in institutions or kept hidden in the back bedrooms of family homes. You know, like the simpler, gentler era depicted in Norman Rockwell’s art: a time when families sat down together every night at the dinner table and the worst trouble little boys got into was dipping girls’ pigtails in inkwells. Page through Rockwell’s illustrations in a book or online and you’ll be hard-pressed to find gimps included in his rosy vision of an America that never was and never will be.

Perhaps you’ve heard someone say that a building doesn’t have to be accessible because it’s been “grandfathered.” When I hear that word, at first I picture a kind, gentle older man who loves to go fishing and hands out candy to his grandkids.

But then I remember it doesn’t mean that at all. It’s really an excuse to avoid letting gimps in the door. And a pitiful excuse, at that. The ADA is a civil rights law, not a building code. You can’t deny folks their civil rights simply because you’ve been denying their rights for so long, it’s magically okay to keep denying them. To follow that twisted logic would mean allowing racially segregated lunch counters to remain segregated because that’s how it’s always been.

Creating access in older buildings is often a matter of a couple factors. Are the decision makers in charge truly committed to creating an inclusive community and are the architects and engineers up to the task?

Take for example, the Uffizi Gallery in Florence, Italy. It’s one of the most celebrated art collections in the world. It includes masterpieces by da Vinci, Michelangelo and Botticelli that will make you drunk with joy. And it’s really, really old. It was completed in 1581 for Cosimo I de' Medici, who was not exactly known for being a proponent of disability rights. And yet, the Uffizi is exquisitely accessible to wheelchair users, and proud of its touch tours for people with visual impairments. The elevators and ramps are not big, ugly and awkward. They fit seamlessly into the structure, never taking away from the beauty all around.

How can this be? Shouldn’t they have told gimps, “Sorry, you’ll never see Botticelli’s Primavera because, like, the Uffizi is just too old. And, oh yeah, it’s grandfathered.”

Am I ever glad they didn’t. I’ll take Botticelli over Normal Rockwell any day.

UNBROKEN

Dear America:

It’s been nearly a quarter century since the Americans with Disabilities Act was passed. Many of you may think folks with disabilities are equal now. That perhaps we should just shut up already and move on.

I understand that reaction. People with disabilities haven’t told their story. We’ve let others – usually clueless, often cruel -- tell it for us.

A common but inaccurate story is told by the business owner who resents the ADA. He thinks he’s done everything for those gimps, even put in a ramp. Why can’t they just be grateful, even if the ramp is dangerously steep? The local news airs a story of the struggling business owner allegedly on the verge of bankruptcy, because those darn gimps insist his ramp isn’t up to snuff. 

But the story fails to explain that the ADA is not a burdensome building code but a civil rights law. It fails to point out that its requirements are usually less expensive to meet than already existing structural, electrical and plumbing codes. The story doesn’t say ramps are involved so people with disabilities can get into the building like everyone else. The story doesn’t clarify that refusing to remove physical barriers is the same as denying basic civil rights by posting a sign saying “Whites Only” or “Men Only” or “Christians Only.”

There are other stories told about people with disabilities rather than stories told by them. Like when the media made Christopher Reeve the de facto spokesperson for every disabled person on the planet.

I have no ill feelings toward Reeve. But Reeve expressed a very different mindset than the majority of folks with disabilities. He lived many years without a disability. After his injury, he was focused on curing disability rather than making a meaningful life with it.

Fueled by the national media, Reeve’s message aligned with the medieval way of thinking: a disabled person is a broken person. And the only way to deal with someone who’s broken is to fix him. There are normal people and there are disabled people. The normal are whole and valuable, and the disabled are broken and worthless.

The media’s focus on Reeve and his obsession with a cure took away the focus on everyday folks living with disabilities. The message was that every red cent should be used to find a cure. Why direct resources to fund affordable, accessible housing so 30-year olds in nursing homes can have full lives in the community with in-home attendant care? The lives of the broken hold no value until they are fixed.

Only a fraction of news stories focus on the modest investments in the built environment and simple reapportionment of government funding that would truly improve the quality of life for millions of disabled folks. The majority of media coverage reinforces vile stereotypes of the pathetic, pitiable and broken.

If news outlets repeated reprehensible stereotypes of African Americans, Jewish Americans and Hispanic Americans, the public would be justifiably outraged. But pigeonholing Disabled Americans as pathetic is still acceptable.

So I implore disabled men and women to tell their stories. To assert their civil rights to employment and transportation and goods and services. To claim the right to a life, just like anyone else.

Tell your story now, or someone else will tell it for you.