WACK FOR WACKIES

The summer just before I turned nine years old changed my life forever. It wasn’t that I acquired some profound bit of knowledge or underwent a religious conversion. Instead, it was a discovery I made with my friend and next-door neighbor, Trish.  Her family was from New Jersey, so she called pop “soda,” and tennis shoes “sneakers.” She had an infectious laugh, was rarely moody, loved Sonny and Cher as much as I did (which is, to say, a crap load), and had a wardrobe of nine or ten bathing suits. My personal favorite was a one-piece that was held together at the belly button by a plastic ring. It hurt her stomach when she’d plunge head-first down the water slide, but it made her look like a miniature Ali MacGraw.

 

One afternoon as Trish and I arrived at the neighborhood pool, I glanced over at another bicycle on the rack where I was locking mine up. On the fender was a Wacky Package sticker, the first one I’d ever seen. It was Six-Up (Six Fooey Ounces. You Hate It – It Hates You.) For me, it was love at first sight, later bordering on obsession.

 

For those of you too young to remember, Wacky Packages were a series of trading cards and stickers by the Topps Company that parodied consumer products. They appealed to me for a variety of reasons. They were bright and colorful. They often featured bodily humor like burps and B.O. (Spit & Spill Cleanser, Belch’s Grape Jelly, Heartburn Cereal) or jokes about current events, like the Cold War (Commie Cleanser, Moscow Syrup, Czechlets.)

 

Many included animal imagery (Pigpen Oil, Toad Bubble Bath, Ape Green Beans) and drawings of the disgusting (Nose-X Tissue, Bird Brain Leftovers, Decay Toothpaste.) I adored the Wackies of things supernatural (Hex-Lax, Scary-Lee, Play Skull) and even the jokes about death (Casket Soap, Killette Hair Spray, Nooseweek Magazine.) Their use of parody reminded me of my beloved Mad magazine.   

 

Starting the summer of 1973, I bought as many Wackies as I could afford with my meager allowance. Eventually, I acquired T-shirts sporting large decals of the stickers, including Rice-a-Phony and KoDuck. Forty-plus years later, I still adore them. I would decorate a room in my home with them from floor to ceiling, if I could. Wackies shaped the woman I am today. I still enjoy humor that uses both high-brow wordplay and low-brow crudeness. I appreciate tweaking the nose of corporate American and consumerism.

 

And I still think back fondly on lazy summer afternoons when I passed the time reading Mad magazine and buying Wacky Packs at the convenience mart and swimming with Trish.

DOING THE DME SHUFFLE

Let’s talk about a tricky dance with a lot of steps, and I’m not referring to the tango, waltz or minuet. It’s a dance familiar to everyone who uses a mobility device and has health insurance. I’m talking about the DME shuffle.

 

DME stands for “durable medical equipment,” the jargony moniker used by the insurance industry to refer to equipment like wheelchairs and scooters. It also refers to things like oxygen tanks and CPAP machines.

 

I’ve never worked in the insurance industry so I don’t know its inner workings. But I’ve been a consumer of insurance coverage for decades, so I’m an expert of sorts on navigating from the outside of what feels like an impenetrable, byzantine system. And despite my years of experience, I never cease to be amazed by its frustrating unwieldiness.

 

Take wheelchairs, for instance. I’ve been a wheelchair user for 30-plus years. I need one to traverse distances of more than four or five feet. Simply put: I gotta have a functioning wheelchair about 16 hours of each and every day, or I’m screwed.

 

Most of the time, it’s cool. But things get real tricky when it becomes evident that my chair is getting to the end of its life span. One can only repair and hold something together with chewing gum and paper clips for so long.

 

I can’t predict when the chair will crap out for good. And because it’s essential to my most basic functions, I don’t want to wait too long. Why? Because acquiring a new one is about a six-month process.

 

The process begins with getting a prescription and a letter of medical necessity from my doctor. Since he’s busy guy, I supply him with the essential info and suggested language he needs to write them. Once I’ve got these documents in hand, the real fun begins.

 

Insurance providers typically subcontract with other companies to provide DME. The DME provider’s bread and butter, though, is primarily diabetic supplies and off-the-rack walkers. When it comes to wheelchairs, they try to push the bare bones basic, one-size-fits-all variety. Give them your height and weight, and they’ll order you a small, medium or large. Those are fine for the retiree who needs one only for trips to the mall or county fair.

 

But I use a chair many hours every day. I must be evaluated by a rehab professional to determine the type of chair that can accommodate my functional limitations and ergonomic needs. The seat must be high enough from the floor so I can stand up unaided. The back rest must provide comfort and support in the right places. I need a seat cushion that supports my posture but doesn’t aggravate my chronic sciatica. The underside of the chair must accommodate a large bolt that can lock the chair into my van’s tie-down system. I’ll spare you the remaining details.

 

My very real needs are at odds with the one-size-fits-all DME system. This means I must steel myself for a protracted back-and-forth with the insurance provider. It means many months of responding to requests for information and waiting for approvals that allow me, video game-like, to advance to the next level. Months of whistling through the graveyard that my faltering chair will continue to work.

 

It seems that, even if a wheelchair is essential to my ability to function, I’m supposed to have only one at a time. A back-up second power chair is frowned upon.  Apparently, insurance coverage does not mean ensuring I will never be without a working chair so I can go to work or the grocery store.

 

And heaven help you if you need a power chair sometimes and a manual chair others. For instance, I cannot independently propel myself in a manual chair. I need a power chair to get around on my own, but I also need a ramp-equipped van to transport the power chair. When my van is in the shop or not practicable for a trip, I need a lightweight manual chair because that’s the only kind that can fit in the trunk of a car. Insurance companies don’t seem to get that. I once had an insurance company employee on the phone ask me which is my primary chair: power or manual? My efforts to explain why both were essential were in vain. Barely containing my frustration, I asked them woman which was her primary leg: the left or the right?

 

With each passing year, I become a bit more adroit with the DME shuffle. But I really, truly wish I could simply mix myself a caipirinha and change up to a gentle samba.  

POWERING (AND EMPOWERING) THROUGH THE WORLD ON WHEELS

There’s no two ways about it: wheelchairs are demonized in our society. They’re seen as a symbol of weakness and failure rather than of power and liberation.

 

I had many orthopedic surgeries as a teenager and had to use a wheelchair for mobility during the long periods of rehab. But because of the way other people treated me when I used a chair, I was determined to get back up on my feet, even though walking was painful and draining much of the time.

 

I didn’t have a power wheelchair that I could use independently until I went away to college. I immediately realized the freedom it provided, but I was very conflicted about using it.

 

Normally, if I had a flare of pain, I would take my chair to and from class for a day or two. But I always preferred to walk, whenever possible. I still struggled to reconcile using a chair with my self-image. If I were a quadriplegic due to a spinal cord injury, I’d have to use one for mobility – there’d be no room for debate. But I inhabited a realm betwixt those who walked all the time and those who never did. There was no “how-to” guide for someone like me, or at least I’d never seen a book titled Sometimes Your Ass Walks, Other Times it Rolls: a Guide to the Wheelchair Netherworld at Walden’s at the mall.

 

Some part of me was still in denial about the severity of my disability and my need to use a chair. People treated me differently when I was in the chair instead of walking – no question about it. I sometimes felt like the homeless bag lady who everyone sees on the street yet looks right through. And like a street dweller much in need of a bath, people often made wider circles around me when I was on wheels, as if I smelled bad or had a contagious disease.

 

It was all pretty ridiculous, since even when I was up and walking, I would never be mistaken for an able-bodied person. My rear end stuck out, my strides were tiny and my gait included a side-to-side rocking motion. Standing or seated, I was still a gimp. But to a lot of people, a wheelchair is a prison, a sign of tragedy. It’s reflected in archaic terms such as “wheelchair-bound” and “wheelchair-confined.”

 

At age 20, part of me still bought in to the idea that to use a wheelchair – even when I hurt so bad, I was sick from the pain – was a sign of failure. I simply wasn’t trying hard enough, wasn’t soldiering through like I should. Using a chair meant giving in, that I would never be fully accepted into the “cool kids’ clique” of the able-bodied.

 

I’m ashamed to admit that, on the days in college I did take the wheelchair, I hid it. I would purposefully arrive early, find an adjacent empty classroom, park it there, then walk over to my class. Crazy, huh?

 

After half a century of living, I’m finally comfortable navigating through the world on wheels. The top of my head might be a couple of feet lower in altitude, but my mind, heart and soul are the same. If other people choose to devalue or infantilize me, it’s their problem, not mine.

 

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.

WHEN PUTTING ON THE DOG IS A PUT-ON

What is it with human beings and their tendency to exploit something, even if means hurting others?

 

It seems there’s been an incredible proliferation of fake service animals as of late. Some people without disabilities are choosing to masquerade as folks who are disabled and pretend Fido or Fifi is a service dog rather than a pet. Then the dog can accompany them anywhere the general public can go: restaurants, stores, theaters, parks, hotels, airplanes – you name it.

 

How can this be? Unfortunately, the law inadvertently makes fraud possible.

 

If someone is legitimately disabled, the disability is obvious and the dog’s assistance is readily apparent (e.g., the dog is guiding an individual who is blind, pulling a person's wheelchair, or providing assistance with stability or balance to an individual with an observable mobility disability), then the ADA says a business is not even supposed to ask questions. Owner and dog are to be admitted.

 

When the person’s disability is not apparent – as would be the case for someone malingering but also for someone with a legitimate but hidden disability -- the law allows a business to ask the dog owner two questions. Does he need the animal because of a disability and what tasks has the animal been trained to perform? But that’s it. If the fraudster says the dog is a service animal and gives one example of a “task,” the inquiry ends. Come on in.

 

Under no circumstance can a business require the owner to present any special identification cards or proof that the animal has been certified, trained, or licensed as a service animal.

 

Obviously, knuckleheads gaming the system hurt folks with real but hidden disabilities the most. But in the end, the fakers hurt everyone. Businesses are becoming more suspicious and, ignorant of the law, are insisting that a legitimate service dog must wear a special vest or its owner must have some sort of a wallet card certification.

 

Because folks with real disabilities are growing tired of being hassled every time they go to Red Lobster or the Gap with their dogs, they’re buying these unnecessary things. Plenty of companies online are more than happy to sell you a $5 vest, a $2 tag and a $1 wallet care for $200, plus shipping and handling.    

 

The more folks that outfit their dogs with these unnecessary items, the more business owners think they’re required. It creates an ugly vicious cycle.

 

The fraudsters apparently see no harm in their lies. They think it’s no big deal that disabled folks are being eyed with suspicion and may even be turned away by frustrated, misinformed business owners.

 

In the end, people with real disabilities who truly need service dogs are the ones who pay the price.

ADA EQUALS CIVIL RIGHTS? RIGHT ON!

God bless the Americans with Disabilities Act. But a pox on the houses of those who named it.

Why is it that the ADA – the most broad-sweeping piece of civil rights legislation affecting people with disabilities – does not have the phrase “civil rights” in its title?

If you’re disabled or love someone who is, you probably know it’s a civil rights law. A law that guarantees that people with disabilities have the same opportunities as everyone else to participate in life -- to enjoy employment, goods and services, and State and local government programs and activities.

But a whole lot of people haven’t a clue. People who should know better -- like civic leaders, business owners and journalists.

Folks who are ignorant in this way sometimes dismiss the ADA. The reason I hear most often as to why the ADA need not be complied with is cash.

“Oh, it would be too expensive,” they shrug and say, whether their cost assessment is accurate or not.

When I hear this, I think, “Are you really OK with reducing my equal enjoyment of civil rights -- and that of millions of others -- to dollars and cents?”

Would these cost-benefit analysts say “Sorry, too expensive!” about the civil rights of people in other protected classes, such as race, gender, religion or ethnicity?

Some would, yes. There are always a percentage of willfully obtuse knuckleheads who can’t be reasoned with.

But I think a lot of folks simply don’t see the ADA in the same light as the Civil Rights Act of 1964 because of its moniker. Just as importantly, we disabled Americans have failed to tell our story.

We haven’t gotten the message out that when a restaurant entrance could be ramped but isn’t, it’s the same as having a sign over the door telling African Americans they won’t be served.

We’ve failed to express that when a city has a website inaccessible to blind residents, it’s no different than telling Jewish people they’re forbidden from using that website.

We haven’t communicated that when a company refuses to provide a reasonable accommodation to a deaf employee, it’s equal to paying a man more than a woman, simply because she’s a woman.

We disabled folks have let others hijack our message and “tell our story” for us. And what has it gotten us?

Slanted news stories about those angry handicapped people who should shut up and simply be happy with their special parking spaces.

Shamelessly bigoted politicians who demonize the ADA as something that allegedly bankrupts hard-working business owners.

Sensationalistic, inaccurate headlines about some malcontent in a wheelchair who sued one of those hard-working business owners because a toilet stall was one-eighth of an inch too narrow.

How do we fix it? How do we turn this around so Americans understand the true character of the ADA and its importance to people with disabilities?

I’m not sure. But a good start would be for disability rights organizations to align themselves with other civil rights organizations.

I yearn to see Jesse Jackson on TV asserting that the ADA is just as important to the equality of Americans as the civil rights acts passed in the 1960s.

I long for the day when other leaders – such as those representing Jewish, gay and women’s rights groups – champion the rights of people with disabilities along with those from their own organizations.

Until then, the struggle of folks with disabilities may have plateaued out.

Look on the bright side: we still have the parking.

THE PRISON OF DENIAL

I used to think denial was like a light switch: either all the way on, or all the way off. For example, you either believed in evolution, or you clung to your knuckle-dragging dogma and denied its existence altogether.

But like so much of human behavior, denial is complicated, shaded between stark black and white with many hues of gray.

Denial can only be put to rest with unconditional acceptance, and acceptance is a long, multi-layered process. I know this all too well. It took me many years to fully accept my diagnosis of rheumatoid arthritis.

No one wants to accept that something terrible has happened to them or to a loved one, especially something utterly undeserved. We want to believe that, all things considered, the universe is fair. The good will be rewarded; the evil, punished. 

What if the terrible thing that happens is starkly real today, but illusive tomorrow? A severed leg ain’t growing back -- ever. You either accept it or you’re going fall down a lot.  But rheumatoid arthritis, or RA -- my disability, is often episodic. Just when you think you can’t take one more miserable day, it eases off for a bit. This only encourages the false hope that the medication, prayers or copper bracelets are actually working.

None of the many forms of arthritis have any known causes or cures. Lots of theories, nothing for certain. This always leaves the door open to “someday they’ll find a cure.” I can tell you that – if you’re not careful -- that door leads straight to the dungeon of denial.

Today, there still are no cures for RA but there are many good medications that can effectively manage symptoms and prevent joint damage. But back in my day if you had the disease in severe form, effective treatment options were sparse.

After half a century of living, I accept that I will always use a wheelchair for mobility. That I will never climb the terraces of Machu Picchu, or wear a pair of high heels.

If you’re struggling to accept a disability, don’t beat yourself up. It takes time, lots of crying, a good sense of humor and perhaps some talk therapy.

Stay strong. Fight past the shame of “otherness” imposed on us by society.

Ultimately, acceptance isn’t defeat. It’s liberation.

TESTING THE TABS

It’s sometimes hard to gage how folks see you when you have an obvious disability. In their eyes, are you a pitiable creature, a thing to be loathed, a fetish object or simply another human being? I occasionally assume the worst about TABS – the temporarily able bodied. I catch myself now and then presupposing someone harbors bigoted views, even if they don’t.

 

When I was younger, I used to secretly put others through tests. Perhaps it wasn’t the nicest thing to do, but it seemed necessary at the time. I would make a new friend or meet a cute guy who was boyfriend material, then see how they would react to my disability in certain situations. I was B. F. Skinner and they, my lab rats.

 

When I went away to college at 17, I had my first personal care attendant that wasn’t a family member. I felt an immediate connection to her. She was enthusiastic but not fawning, and clearly had a sense of humor. She seemed perfect. Or was she?

 

One day shortly after Lexie had begun working for me, we were in the dorm bathroom. She was helping me with my morning ablutions. We were telling jokes – some cheeky, others raunchy – to pass the time. When it was my turn, I told her a joke that poked fun at disabled people but was straight-up hilarious. She laughed and shook from her head to her toes. Other people I’d told that joke to had frozen just after I delivered the punch line, afraid to laugh. Lexie showed no such fear. She passed my test with flying colors.

 

The tests I devised for boys were different. If -- when I first met them – I’d been walking, I made sure they’d see me later in my wheelchair. I then watched their reactions. Did their faces show shock or disgust? Discomfort or curiosity?

 

If a boy passed my initial test, then he moved to the next level. On a first or second date, I’d be sure to hold his hand at the restaurant or movie theater. My hope was he’d be at ease being seen with a disabled chick in public. Usually, he passed. Usually.

 

Looking back, I realize that my little tests were as much about my own presumptions and biases as anyone else’s. I wasn’t yet comfortable in my own skin and sometimes projected my discomfort on others. Now in my fifth decade of living with a disability, I can finally admit it.