The Most Dreaded Disease of All

I like my breasts. I truly do.

They’re nothing special -- certainly not Playboy caliber. But they’re mine. And I’d like to keep them healthy.

Which is why I was disturbed the other day when I passed by a pink mobile mammogram RV. It was parked on a public plaza to motivate women to stop by and have breast imaging done.

I’m all for that. Anything that can detect cancer early on is a godsend. But what stuck in my craw were the four steps at the entrance of the RV. I circled the vehicle but saw no ramp.

I guess the message is this: access to medical care doesn’t necessarily include access for folks with disabilities.

In the interest of full disclosure, I’d already had my annual mammogram done at a world-class cancer clinic. But I thought about other women with disabilities in my community who, for whatever reason, may not able to go to a conventional facility for imaging. Shouldn’t they be able to stop in and get services at the mammogram RV, like anyone else?

It got me thinking. I thought back to my mammogram the previous month. Although the machine’s height was adjustable, there was no way I could have contorted myself into position without standing upright. Because even though I use a wheelchair as my primary means of mobility, I can stand and walk a few steps.

What about others – such as women with spinal cord injuries -- who cannot stand up for a few moments to complete the imaging? And why aren’t people designing imaging machines that are accessible to people with disabilities? If such machines exist, why wouldn’t a major cancer clinic with a stellar reputation have one?

Then I remember how, a couple years ago, I needed a breast ultrasound to supplement the mammography. That same clinic’s ultrasound rooms were so small, I had to park my wheelchair in the hallway and walk into the room to have the test done.

This made me angry, which then jogged my mind further. I remembered how I’ve been going to the same rheumatologist – a wonderful doctor whom I adore -- for 13 years. And though his clientele consists primarily of arthritics who have chronic pain and struggle with limited mobility, none of his exam tables have adjustable height. Should he need me to get up on the table, I would have to either pole vault onto it, or be lifted by a couple of his staffers. Both options are unpleasant and quite frankly, should not even have to be considered.

More memories flooded my brain. I recalled my week-long hospitalization after major hip surgery last year. My room was located on the orthopedic unit, yet the bathroom was inaccessible to me. My surgeon allowed me to get out of bed and use the commode -- even encouraged it. But I couldn’t because the hospital could not provide a garden-variety seat riser. I was also denied a shower because the bathroom had a tub shower but no transfer bench.

Access to health care, from financial and even geographical perspectives, is challenging enough as it is. Why should folks with disabilities have additional hurdles that make them struggle for -- or even  forego -- medical care in one of the most prosperous, developed countries in the world?

I ask the question, yet I already know the answer.

Because ableism -- discrimination in favor of able-bodied people -- is as prevalent and destructive as cancer has ever been.

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.

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.”