Tag Archives: Disability

New York City Taxis: Where’s The Beef?

26323991 - taxi driver - road rageAs I made my way to my first DBS programming session during the chaos marking morning rush hour, I was abruptly reintroduced to the inhumanity inhabiting my fair city. Hardly the picture of health, I stood braced against my walker, a colorful flowered scarf sculpting my recently shaven head, watching taxi after off-duty taxi unceremoniously sail by me – patently ignoring my hand wildly flailing through the air in an act of deliberate motion having nothing to do with my Dystonia. I couldn’t help but surmise that cab drivers hold no interest in attending to my walker. Where was Sir Galahad, galloping up Third Avenue to rescue me on his black and white checkered horse majestically draped in yellow?

I concluded that I needed to park my walker at the curb behind me and hail a taxi as a solo act. Of course, as soon as I turned towards the sidewalk, my gallant appeared, sharply braking beside me. Putting his fellow cab drivers to shame, he whisked my walker into the trunk with aplomb, After all, it doesn’t take Mr. Universe to manipulate a few pounds of folded metal.

I hold abject disappointment in NYC’s private transportation corps, which, for a pretty penny, is my first line of defense against the perils I face using public transportation.

 

 

Lions, Tigers and Bears, Year 2!

9287823_s editedLiving with a rare disease like Dystonia, I find myself self-conscripted into service as a fundraiser. It’s all rather simple: If I don’t invite people to care about my little-known disorder, who will? Curing Dystonia takes a village of patients, friends, and families…not to mention the medical investigators working diligently on our behalf!

I’ve also discovered that FUNdraising can indeed be FUN. Dystonia Zoo Walks empower us to advance our cause while checking out lions, tigers and bears, oh my!

For those who live in the New York City area, I hope to see you on September 18 for a memorable day of Dystonia fundraising and awareness at the Bronx Zoo. We offer a unique “twist” on traditional charity walks, as there’s no formal walking course. Jump-start your Sunday with family-friendly festivities – perhaps win a raffle prize – and then meander your way through the fabulous Bronx Zoo. Of course, you’re welcome on board Team Dystonia Muse! Can’t join in the fun? We’ve got you covered. Support us by making a donation.

Use the following link to register:  Bronx Zoo Walk Registration
You can sponsor me here:  Pamela Sloate’s Personal Page

From the bottom of my heart, I thank you for reading this blog and supporting my journey. With a team effort, we can eradicate Dystonia!

-Pamela-

2016 Bronx Zoo Walk Postcard Image

 

 

Life In The Trenches

5365287_s_editedI’ll confess, for most of my life, I didn’t view myself as “disabled,” reserving this term for those with even more extreme physical liabilities. Yes, I felt “different,” but it never occurred to me that Dystonia qualified me for membership in any kind of exclusive club.

In my confused reality, I viewed individuals with disabilities as mirrors of my own imperfections, reflecting a self-image I couldn’t bear. Now I simply see people whom I count among my closest friends for reasons that have everything to do with the spirit their hearts embrace. No saints or heroes, just soldiers on personal battlefronts waging reluctant but necessary combat. After all, life is lived in the trenches not on a pedestal.

My argument with the whole concept of disability is how it creates a notion of us vs. them. Those of us with chronic illness don’t conduct ourselves by majority rule or elect representatives to a special Disability Congress to proclaim declarations of common attitude and award badges of merit for supposed acts of heroism. We take our lives thought by thought, day by day.

Think you’re so far away? Challenges abound for all of us, what’s your struggle? You could even try it for a few minutes, an hour, a day. Blindfold yourself. Shake your arm every time you eat, drink, write, keystroke, or play an instrument. Spin around crazily, then swim and sway down the street. Attempt 24 hours in a wheelchair. Do you feel to be a “sore thumb” or is your entire attention focused on your tasks? How much of you feels “able” and how much “unable?” It’s not our physical differences that mark us with a scarlet “D” but how society finds the need to distinguish us by them. The only “sore thumbs” are those thusly viewed by the rest of the hand. How about examining the degree of perfection the other fingers can claim!

The lesson I try to embrace every day is that each of us is a composite of unique information, no one aspect so particularly remarkable that we stand out as any more “different” than the person sitting or standing next to us. When it comes to my personal data, Dystonia is a fact tucked into the details of my life that’s completely uninformative regarding my worth as a person. While Dystonia is a bit of a visual drama queen, why it should dictate a “one size fits all” label is beyond me…and unfortunate.

I’m just like everyone else. I carry hang-ups, sport frustrations, worry about inconsequential details, celebrate life, laugh, love, dream, and strive to hold inner peace. May you find yours as well.

A Hop, Skip & A Jump!

26418170_s Edited#JumpForDystonia is sweeping across cyberspace and I couldn’t be more excited. This inspirational awareness campaign launched by Dystonia Europe reminds us to live our lives joyfully and offers us hope that our seemingly elusive dream of freedom of movement is but a hop, skip and a jump away!

When was the last time you embraced a leap of faith? How often have you jumped for joy, jumped into the conversation, jumped to a conclusion…or jumped off that proverbial cliff? How about taking a flying leap and jumping for Dystonia?

There’s no better way to begin than a jump-start! Join our #JumpForDystonia Flash Mob this week (July 13-19) to ignite a wildfire of awareness across social media. Simply share a pic or video showcasing your best – or most creative – jump accompanied by the hashtag #JumpForDystonia. Pole vaults, long jumps, ski jumps and jump shots are all welcome. Enlist friends family and work colleagues. Let’s get the whole world jumping for Dystonia!

Check out our Flash Mob Event:  #JumpForDystonia Flash Mob

Enter the Photo Contest:  #JumpForDystonia Photo Contest

They say a picture is worth a thousand words. This #JumpForDystonia video is worth a million:

Multi-Tasking

17693121_sNow this is an interesting exercise. Why don’t you give it a shot? Here’s the beginning of my list of challenging “multi-tasks:”

  1. Walking and talking on the phone.
  2. Maintaining my balance going down steps.
  3. Playing Twister. Won’t happen again…last game I tore my meniscus!
  4. Laying inside an MRI machine and holding still.
  5. Articulating individual words while speaking in sentences.
  6. Any exercise that involves my legs and another body part.

What are your fiercest multi-tasks?

Independently Mobile?

26025652_s editedWithin my neighborhood, I rule the sidewalks in the company of my slick, 4-wheeled sidekick. Venturing onto public transportation pitches me into the world of “handicap accessible.” To my utter dismay, the 86th Street subway, a hub of activity and my home base, fails to accommodate. The “convenience” of the express train perpetually looms a foreboding 3 flights of stairs away.

So what’s the problem? Isn’t this where the dashing knight in shining armor comes galloping onto the scene to rescue the damsel in distress struggling with a precarious descent while juggling 5+ pounds of folded metal? Plenty of burly armed men bustle past me…not to mention a choice selection of NYC yuppies. Adamant about requesting assistance, I’ll patiently await my gallant to little avail. Seems this dystonia damsel requires a megaphone to motivate an endless supply of walking testosterone pursuing their destinations with single-minded focus.

Life is a trade-off and my solo adventures arrive bundled with a steep price. I find myself recalibrating my notion of “independently mobile” to accommodate the human and technological assistance I’m helpless to escape.

Rolling Along Canada’s Old Towns

Edited 27690625_sIn 2013, I took a summer “vacation” from Dystonia! This year, I packed my Dystonia – along with my cane and walker – to head to destinations north of the U.S. border.  In case you’re wondering, I left my ego and my pride safely tucked away in my apartment. This was my first travel adventure with walker in tow and I was determined to serve patriotically as the penultimate trooper. Certainly, I’d no intention of defining this sojourn by my special needs.

The advance forecast was smooth sailing, my only trepidation the scents that threatened to assail me. Little did I expect a daily roller coaster ride rife with spine-tingling bumps and spur-of-the-moment curves.

Old Montreal offered a charming tangle of narrow cobblestone streets and squares lined with bistros and shops inhabiting the shadows of a modern city. Calling the terrain challenging is an understatement when my walker bounced over every square inch of cobbled friction. Swallowing my fatigue, I plodded along at my own measured pace, feeling a bit like Moses parting a sea of pedestrian traffic.

Unbeknownst to me, Montreal was merely my “practice run.” Our next destination, Old Quebec City, presented a veritable bobsled track snaking along the bank of the St. Lawrence. I found myself chasing my walker down descending routes, then huffing and puffing the upswings. Rain showers forced me to navigate single-handedly, a swift kick to my stability. I wasn’t the only one aching: my poor walker survived worse for the wear, even requiring an impromptu French Canadian repair!

A series of small victories over an endless obstacle course taught me an important lesson about weathering life’s bumps and bruises. While my sojourn was physically daunting, I brokered a treaty with my limitations and adjusted my future travel expectations.

Me and My Shadow

18983305_sThe latest experimentation with my meds sent my walking into a funk, leading me to a newfound appreciation of why I tolerate their medical mischief. It also rendered me significantly less independently mobile – in need of what I shall call a “new friend” – landing me smack in the middle of a vigorous debate between my good sense and inner stubborn mule. Seems my resistance to special assistance is alive and kicking. Notwithstanding 40+ years living with Dystonia, I cling to a foolish insistence I’m no different from everyone else.

As a cantankerous attitude sought to assert itself, complications immediately ensued when I discovered the surprising rewards of life with a walker. Let’s start with my ability to perch comfortably at random street corners – not a bench in sight – for a much-welcomed respite. It dawned on me, not only needn’t I fear wiping out from an unruly twist of foot…or exhaustion…but I now enjoy a custom seat at any outdoor venue. Further, thanks to my visible aid, New Yorkers have become more generous with their assistance.

Where I expected shock from friends, I encountered awe over the creature comforts at my fingertips. Indeed, they quickly jumped on the bandwagon, appropriating space for handbags and parcels – triggering an onslaught of speculation about the moneymaking potential of my new adventure. Inject a flash of ingenuity and my walker may very well present a portable gold mine.

As for me, I often mistake myself for a mother out for a spin with stroller in tow…only this femme is walking herself!

Getting On With Life

16542931_sAll too infrequently, we encounter unexpected inspiration. My online activities have led me to friendships with women who were once victims of abuse but presently stand as far from victims as one could possibly imagine. These female warriors, speaking their truths and lending their voices to those who face adversity, truly epitomize “Getting On With Life,” a concept I strive to embrace.

Getting On With Life speaks to so much more than putting our pasts – and hardships – behind us. It’s about moving beyond bitterness…even betrayal, recognizing those forks in the road where we’re given the opportunity to choose self-respect and taking the path of integrity. While I can’t begin to speak to the personal trauma experienced by those who’ve suffered physical or emotional abuse, I hold faith in the resilience of the human spirit, besieged but not broken. When pushed down, we need not lay on the ground amid the dirt. Empowerment is found in the determination to pick ourselves up and pursue our inner potential by “Getting On With Life.”

Remember, honor is only found in the causes we espouse when we abide by the principles for which we advocate. Even a life of impassioned activism stands empty if we fail to advance our own human decency.

 

Life Before Dystonia?

Individuals who encounter health issues later in life tend to reference “before” and “after,” a distinct turning point that irrevocably rocked their world. I can’t remember time before Dystonia. All my experiences have been informed by this condition. I’d welcome the opportunity to meet myself absent Dystonia, me minus the obsessive need to assert control in compensation for uncivilized muscles that refuse to be tamed. I don’t carry a mental list of activities I “miss,” just ones I imagine and my own unique take on the everyday.

17781067_sOne girl told me how much she missed skiing. Based on my singular experience, can’t say I’m sacrificing much. My foot, none to partial to enforced confinement, had its own opinion about staying in that boot. I found the view from the lift engaging until my brother slathered me with tales of fallen horror. Reaching the bottom waxed problematic but I swiftly mastered the art of falling and Dystonia helped my skis form an inverted “V” to slow the pace. Didn’t bother with a second run, the hot chocolate bar held more appeal. I’ll say this, I looked rather svelte in my snowsuit and things weren’t all bad considering the miracle of getting my feet into those boots and myself down the slope.

The sport of movement disorder is an alternate reality of the same world. We’re swept along on a moving sidewalk that doesn’t stop, tiny little “events” filling our days. Whatever the age of onset, I surmise the physical ease of a prior existence becomes blurry for anyone as the years pass, like an inability to remember life before becoming a parent or falling in love. I walked and wrote correctly for my first 8-1/2 years and spoke “more acceptably” for my first 20. These memories entirely evade me.

Chasing lost yesterdays is no way to build our todays. We must strive for the happiness that’s within our grasp and understand that no human being exists without limits. I find tremendous beauty in the hope, optimism, and insight of those who walk the cracks in the pavement and compose their lives into unique poems.

 

Dis*ease Unease!

For most of my life, I’ve been “dis” at ease with my Dystonia, so if the shoe fits…

5922589_sThere are a number of nasty words in the English language but perhaps none worse than  “dis*ease,” “dis*ability” and “handicap.” They make us feel less than whole human beings and fling us outside some perceived realm of “normalcy,” promoting discomfort with what I call lack of perfection. They beg the questions: Is there something wrong with ME? I move, therefore I am? I spent years chasing idealized images until stopping short at the conclusion my flawed realities will have to do perfectly fine. Besides, I prefer to see life as a philosophical and psychological journey rather than a crooked walk down the street.

We all share in creating dis*ease unease: personal discomfort with outward signs of weakness, inquisitive (I didn’t say mean-spirited) stares turning humans into objects, well-intentioned questions, unsolicited assistance invading silently staked personal dignity. No one wants to envision taking on the physical and emotional struggles of illness but for many, ill-health is transacted as an inescapable aspect of the business of life.

When dis*ease turns on a dime, remarkable is the proliferation of the healthy, blissfully unaware of their fragile status. People fail to appreciate the feats of nature in the properly functioning body until the control system goes awry, focusing on beauty bumps that mar the surface. 13299032_sWe worship flawlessness, youth, good looks, virility, physical strength, aiming for the maddeningly elusive perfect 10. When I confess my desire for someone’s easy lope, they laughingly note how I hardly covet their stride while I stand mystified. Perhaps they imagine a pigeon toe, wobbly knee, or less than shapely leg, rather insignificant compared with the navigational mischief practiced by my naughty neurotransmitters.

Our true beauty resides beneath the skin in how we open our hearts to life and share our souls with others. Dis*ease can distort the pretty picture that’s merely gift wrapping, requiring us to appropriate Superman’s x-ray vision and judge one another for the qualities we carry, catapulting dis*ease into ease.

Real Men Eat Quiche!

OK, perhaps a bit of backtracking is in order. When I was in 5th Grade, a group of ignorant boys mimicked my walking in a school hallway, changing this young girl’s life. From that moment, I began to embrace an irrational belief that my Dystonia was somehow distasteful to the opposite sex, reinforced over time by a paucity of male friends, dates and boyfriends. Naturally, I blamed Dystonia, the obvious scapegoat for anything that pushed my life outside the “normalcy” I craved.

17841732_s EditedFortunately, my seemingly reasonable but foolish presumptions were counterbalanced by an imaginary prince who whisked me away from Scarsdale on his white horse – or via white Corvette. In the plot line of this fairy tale, my gallant chivalrously brushed aside my health issues upon gazing into my eyes, a delightful fantasy that failed to procure me a social life.

Notwithstanding a medical lifetime sentence imposed at age 8-1/2, a troop of real world princes busted me out of my childhood prison, demonstrating that eating Quiche and sensitivity to Dystonia are a real man’s prerogatives. Now I take heart in guys who treasure books for the reading and understand a wealth of imperfections keeps life interesting.

I leant a heavy hand constructing the walls that held me captive. No matter our objective circumstance, we imprison ourselves in the subjective images we embrace. The key to living with – or without – disability is to espouse a “healthy” self-view and carry faith in life’s possibilities. I ever take heart my Cinderella ending lingers within arm’s reach.

 

Paddy Doyle: Living A Life Of Impassioned Activism

Setting Sexuality On The Table!

Edited 9717596_sTuesday I hosted a WEGO Health Chat addressing Sexuality & Disability but the truth is that sexuality can’t be generalized to such a heterogeneous group. The disabled and chronically ill constitute a complex diversity of humanity. We’re male, female, gay, straight, young, old and in between. When it comes to the passion department, urges and desires are equal opportunity employers. Further, life’s challenges fail to discriminate: anyone can have a trying day that inhibits the libido from coming out to play.

As for my physical realities, they’re part of the package, as much for me as everyone else, asserting enticing attractions as well as inconvenient complications. Engaging in heated flirtation while battling a slow-moving tongue may induce a feeling of “mum’s the word,” but a searing gaze recharges my mojo. Anyway, isn’t life all about point of view? Walking is my attempt to exercise control over a brigade of chronically misbehaving muscles that refuse to execute their assignments. Sauntering is embracing a saucy step with a womanly swagger – taking my derrière for an alluring ride. My Dystonia is actually an unwitting ally, initiating a turn of hip that lifts my behind in a fetching upswing!

We all face an uphill battle when we’re constantly besieged with the impossibly idealized body so all I can say is pack confidence. Owning your body with all its bumps and curves goes a long way towards owning that stride! The bigger picture is that we don’t simply access sexuality from our physical selves and a perfect human form isn’t a prerequisite. Glorified images of feminine beauty and masculine virility may set us aflutter, but they fall short of communicating the resounding meatiness of our existence. And for the record, real men…and women sit in wheelchairs. Body parts become incapacitated, not our thoughts and imaginations. The key to passion and sensuality rests within our hearts and minds.

I take my cues from the feelings a man stirs inside me and the ideas I locate within myself. For me, the core of being a woman is practicing compassion, expressing affection, finding my inner truths, and connecting with my deepest desires…which I’ll gladly set on the table with the right guy!

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For further thoughts on the topic, visit WEGO Health’s recap of my Twitter Chat at http://blog.wegohealth.com/2013/02/13/hachat-recap-sexuality-disability/.

Don’t miss this article from The Guardian: http://www.guardian.co.uk/society/2013/feb/12/disabled-people-valid-sexual-partners.

A Seat Of My Own

Over the past year and a half, as my walking embarked on a bit of a downward spiral, I found a new “best friend:” handicapped seating on the subway. Finally, a place to call home in a crowded sardine can lurching along a bumpy ride. As long as I’m not displacing someone in need, I avidly claim my perch.

7255289_sTo my surprise, I’m frequently met with a recalcitrant rider reluctant to surrender their seat until discerning the precise nature of my disability. Even when I offer my legally unnecessary explanation, many a New Yorker either doubt my word or dispute my claim in groundless defiance of city ordinance. Then again, my fellow residents aren’t known for their manners let alone random acts of kindness. Seems utterly beside the point that the law’s on my side.

While I understand subway seats are zealously guarded parcels of New York City real estate, I had no idea sitting activism extended to the handicapped zone. Here’s a taste of the empathetic responses I tend to receive: you’re not pregnant, what’s your disability- that you don’t want to stand, no hablo Ingles (when I point to the bilingual sign, they suddenly lack reading comprehension).

Ultimately, I overcome this appalling behavior by morphing into a human bulldozer bludgeoning obstacles in my path. If necessary, I’ll make an example of gross misconduct or appeal to not-so-innocent bystanders when I’m getting nowhere with the offending criminal. I’ve also utilized these quintessential New York City moments as PR opportunities, handing one “gentleman” an index card urging him to “Go online, Google Dystonia, then spread awareness” though he didn’t quite get the point. Guess the subway isn’t the best venue for a personal publicity campaign!

So let’s review the basics of human etiquette: offer someone old or disabled your seat whether in the handicapped locale or not; stand up for fellow citizens who are getting the raw end of the stick; and never consider yourself in too much of a rush to assist someone in need.