29 May 2011

disability etiquette 101.

walkin'. by Luna Soledad
walkin'., a photo by Luna Soledad on Flickr.
We’ve all heard it said, “It takes special people to do special things,” and while I tend to agree that not everyone in the world has what it takes to manage certain tasks, journeys, or responsibilities that many see as an impossible misfortune when outside looking into such lives of those who juggle everything life has thrown at them with the illusion of finesse, there are times when folks should just keep their mouths shut and maybe just offer a warm smile instead of some wise-sounding rhetoric... Often, this is a sentiment conveyed by well-meaning strangers when faced with the uncomfortable realization that they are in the presence of a parent, guardian, or care-giver of a person with special needs and feel the need to say something in lieu of, “You poor thing, I feel sorry for you.”

Yes, it’s true, unless you’re part of that inner circle of special populations, exceptional people if you will, (be it family, friend, fellow parent, teacher, therapist, or the like), such expressions, however well-meaning, come across as condescending in a manner not unlike rubbing salt in one’s wounds.

I personally do not need to be reminded of how “special” I am. I live it every day. And I can only imagine that other mothers who spend the bulk of their days having fun with G-tubes, catheters, braces, walkers, communication boards and devices, outrageous behaviors, attending IEP meetings, advocating for the rights of their loved one(s), meeting and communicating with a menagerie of doctors and specialists and teachers and therapists, learning medical shit they never wanted to know about, and wiping ass every single day after day, probably feel the same way. --I assure you, we totally get it.

That being said, I realize that most people don’t intend to be mean or rude (for those who do: go fuck yourselves) and can only act in ways in which their life experiences and / or education afford them. Therefore, I’ve compiled a little list of basic etiquette with regards to encounters with special populations for those nice folks on the outside with honorable intentions:

  • Don’t stare. --I would hope that this is self explanatory, but in case it’s not... staring at people disabled or not is in fact rude. You should teach your children this too, however, as a general rule, it’s not a child’s natural curiosity that bugs me so much as their parents... encourage your child to instead say hello, smile, or wave. And if they are curious about a wheelchair or such, allow them to ask; if they ask you within earshot, don’t drag them off, shush, or punish them... it’s how they learn that people with disabilities are indeed people too and everyone benefits from kindness.

  • Don’t ignore. --Many people feel uncomfortable when faced with a situation outside of their experience, even if that situation is meeting a person with a disability. Perfectly natural. But no one likes to be ignored. If my daughter waves at you, as she is prone to do, would it kill you to smile and wave back? She’s not asking for a loan or even a dinner invitation, just acknowledgment.

  • Never assume anything. --People are like fingerprints: each are special and unique. Disabilities are like fingerprints: each are special and unique. Just because a someone may have the characteristic appearances of someone with Downs Syndrome doesn’t mean the individual in front of you functions at the same level as that actor you saw in a TV show once (like actor Chris Burke). Just like regular people (not everyone is a PhD and not everyone can cook edible food), there is an enormous spectrum of varying abilities. In fact, people are most familiar with the term “spectrum” thanks to the public awareness of Autism; the autistic spectrum is a perfect example of extremes. There are persons with Autism who may be a bit quirky (who isn't?) but are amazingly gifted, highly intelligent productive members of society and there are those who cannot speak and live trapped in the darkness of their own worlds unable to dress themselves... even more rare and amazing are minds such as Kim Peek. Just like Autism, disabilities can be every bit as much of an enigmatic intellectual span. This includes issues such as ADD, ADHD, ODD, OCD, and a whole host of other fun stuff, all of which are real, legitimate, and can sometimes be just as debilitating.

  • But they look "normal". --See above.

  • If you feel inclined to speak, direct your conversation first at the person of interest before addressing the parent or caregiver. --It’s just common courtesy and though it’s not the case with my child, most people with disabilities, even intellectual ones, can speak and carry on a basic, albeit probably unconventional, conversation. And they appreciate the attention and exchange because unfortunately they are used to being ignored. It also makes Mom feel good because someone was thoughtful enough to make their kid’s day. Just don’t be disappointed or take it personally if the special person doesn’t outwardly acknowledge you back in a manner in which you are accustomed. Trust me, they noticed; they just may not be able to unlock what they need to access in order to show it.

  • Never underestimate. --I have had to learn this one myself, over and over again, with my own daughter and to this day, she continues to make a liar out of me (as well as many specialists!) should it dare be stated that she is unable to do something. Even for persons closest to an exceptional individual, who know their language, abilities, and behaviors best, it is impossible to know what is understood, unable, or merely defiance.

  • If you feel inclined to inquire, choose your words carefully. --For instance, rather than asking, “What’s wrong with her?” try instead, “What’s her diagnosis?” As a general rule of thumb, stop and think how you would feel if some random stranger walked up and said this to you about your child. Again, children are an exception... A child can only communicate with what vocabulary and communication skills they have acquired in their short little life-spans. When a child asks me why my daughter doesn’t speak or what’s wrong with her, I will happily stop whatever mad errand I am in the middle of, drop to a knee and explain as best I know how with all the patience of Saint Monica because that’s how they learn to become better world citizens. But as a perfectly functioning allegedly competent adult, if you ask me such an asinine question as “What’s wrong with her?” you can expect an equally rude and ridiculous response, such as, “Absolutely nothing; what’s wrong with you?”

  • Ask for help. --Most parents and caregivers don’t mind at all if you ask questions that help you to include their child and loved one. Perhaps they are deaf or do not speak and use sign language... I love when people ask me how to sign something to my daughter (though she can hear perfectly well I’m told; selective listening is another matter entirely) or if she needs assistance with a task... This shows you care.

Someone once told me that disability is not an "if" but a "when." Meaning, there will come a time in each of our lives when we are not capable of being independent to some degree, be it a broken bone, illness, old age, or dementia and will require the care and assistance of others in order to have our needs met... Think about that.

When all else fails, there is always The Golden Rule. Remember that one folks? It goes like this: “Do unto others as you would have done to you.” And by the way, that’s a good one to teach your kids too!

A public service announcement brought you to by yours truly...

"Special people were not born upon this earth to be tested, rather to serve as a litmus for humanity."

...Crystal J. De la Cruz, mother & advocate

09 May 2011


big potty boy! by Luna Soledad
big potty boy!, a photo by Luna Soledad on Flickr.

Mother’s Day, Sunday: In the afternoon, the children were playing out in the back yard while Kevin “supervised” from the deck smoking a cigar, grilling, and playing on his laptop. I was inside taking full advantage of the day with a Mother’s Day nap upstairs.

Suddenly, our son walks out of the “nature area” (the corner of the back yard that is completely out of control with briers, determined saplings, and overgrowth) and exclaims to his father, “Daddy! Piper is trying to eat my poo!”

Yes, our four year old son had gone behind a tree and taken a crap in the yard. He knows better of course and had done so completely covert, but was so taken by surprise at our idiot Jack Russel that he accidentally told on himself.

Try having that conversation with a straight face.

Of course the yard is much preferred to say, the air-conditioning shaft...

Once, when Liam was potty-training some time around one year of age, he discovered that he could lift the air vent covers off and put things down the hole such as toys, keys, clothing, paper, unwanted food, and anything else that would fit. I had been nagging Kevin to screw the vent covers down as digging out these treasures was becoming a real nuisance. Never did I imagine I would walk in the living room one day to find my young son taking a shit down the air shaft, but I did. And just as I spied him behind the couch taking care of business, he stands up butt-naked grinning and pointing to the open hole; “I poo,” he said proudly.

This was one such time I found myself too dumbfounded to take pictures. --Beneath the freshly deposited still-warm baby feces, were various toys and an old 35mm film camera - which all went straight into the trash. But at least the vents finally got screwed down, that day.

What in the world is with little boys and their fascination with poop? I’m beginning to think Freud was onto something...

"The act of birth is the first experience of anxiety, and thus the source and prototype of the affect of anxiety."

...Sigmund Freud

06 May 2011

traveling with strangers.

window seat. by Luna Soledad
window seat., a photo by Luna Soledad on Flickr.
Last month I managed to escape the clutches of North Carolina for a long overdue, albeit much too brief, getaway to Dallas, Texas to spend some quality time with one of my most favorite, life-long people in the universe - my dear cousin Greg.

Even as I excitedly counted down the weeks, days, and hours to departure, I was riddled with guilt over leaving my husband at the mercy of the children for a long weekend. Especially when they all came down with whiny, snotty colds. Although that did not stop me from getting on the plane... or trying to anyway.

March 31st, Thursday evening the clan dropped me off at RDU two hours prior, all packed up properly with travel-size everything in two carry-on bags. --An ugly floral roller bag for clothes, toiletries, etc. and a shoulder bag strictly for my purse and camera bag, least the airline nazis fine me for the extra baggage. It was all a pretty uneventful process initially; I checked in, took my shoes off, did the security thing, found my gate and settled in to read, “Night” by Nobel Laureate and Holocaust survivor, Elie Wiesel (a truly amazing and painfully poetic account; a definite MUST read).

Shortly before boarding, an announcement calling all final destinations for Dallas to the AirTran service desk... I approach and am told that my Atlanta connection has already been missed due to extreme weather conditions - you know, the hurricane-like precursor to the recent tornado epidemic up and down the southern coast as well as all the crazy winter-storms that happened up north. Yay. My choices were: 1) (have Kevin get the kids back up, turn around and come get me) stay the night in Raleigh and (get back up at 4 am with the kids and) fly out at 6 am to Atlanta, or 2) fly to Atlanta and stay the night in a partially comped hotel for a 10 am flight to Dallas... either way, I would arrive in Dallas around the same time Friday morning. --Kevin and I agreed the lesser of the evils was to stay the night in Atlanta and get a good night’s sleep.

Ha ha ha.

So I arrive in Atlanta, the airline equivalent of an overpopulated ZOO, on the last flight of the evening, call the number on the voucher, make a reservation for the Clarion (four start hotel my ass!) for fifty bucks, and then make my way to the other end of the earth to stand and wait a half hour for an over-crowded hotel shuttle bus whose final destination would be my good night’s sleep.

Ha ha ha.

In reality, the forty or so of us tired, hungry disgruntled travelers from a great number of flights were dumped off to form a long-ass winding line throughout the hotel lobby with our bags of crap for check in... I was finally assigned a room and given a room key around 1 am, wished the other weary souls well, got a glass of overpriced house wine in an unwashed glass, and went to my room... to discover the bathroom sink was leaking and I had no toothpaste. An hour later, wine finished, teeth brushed, and sink fixed, I crawled into bed utterly exhausted... only to be awakened not two hours later by a drunken middle-aged cat fight in the hallway outside my room. SERIOUSLY?!! We’re not on spring break here you assholes! WTF? --Normally, my inclination would be to step into the hall and yell at these two twats, but I was just too freaking tired and pissed at the whole scenario and the fact that I had already missed an evening with Greg and decided it would be a good idea not to get hauled off to jail in Atlanta so I lay there cursing in my room until I fell back asleep.

The next thing my barely cognizant brain registered was the sound of the hotel room phone ringing with my morning wake-up call and scaring the crap out of me. Holy hell. I felt like I had been run over by a truck. --The irony that it was then April Fool’s Day was not lost on me.

I was already set to be in a foul mood, mentally daring anyone to jack with me, and sulked back to the too small shuttle bus for the 10 mile ride back to the airport... where a handsome young man promptly gave up his seat for me. I was neither prepared nor accustomed to such chivalry (heck, even as a notably miserable pregnant woman, I don’t recall someone doing that; you’re lucky if they hold the freaking door) and softened my mood accordingly in gratitude. Then a middle-aged African American man boarded the shuttle bus with a warm, happy smile and plopped down in the driver’s seat announcing, “Okay folks, my name is Darryl and I am your driver this morning. I’ll be taking you back to the airport quickly and safely and want to make sure that you have as positive an experience with me as possible so maybe you’ll want to come back and visit the great city of Atlanta and not hate us for screwing up your flights.”

In spite of myself, I smiled inside. He had that infectious kind of happy energy that would not allow otherwise. And for the next ten miles he gave us a brief “tour” of Atlanta, the beloved city in which he had lived all of his life... He tossed out geographical facts and history lessons all along the way - everything from downtown attractions to MLK events and memorials. He told us where four-time World Heavyweight champion Evander Holyfield lives and how his mansion is now open to the public to supplement his cash flow in paying off his eight baby-mamas “but we aren’t going there ‘cause we don’t feel sorry for him...” And he pointed out the $159 million runway overpass at Atlanta airport which took ten years to complete and was only used once for landing causing a massive pile-up on 285 when several terrified drivers erroneously thought the plane was about to crash into the highway.

A hard-working father of two (one in med school and one aged 7), Darryl was a natural “entertainer” with a genuinely likable personality. He truly made my day, lifting my spirits in ways I did not realize at the moment until I caught myself chuckling later remembering his commentary.

By the time I checked in and trekked across the enormous airplane metropolis with its many concords and subways, my back was on fire from carrying the shoulder bag - which I saw as more than enough justification to pop into a baggage store and purchase another wheelie bag. Of course nothing I could afford came in just a simple black so I quickly grabbed a black and white giraffe print to compliment the ugly couch-looking floral I was dragging around, then made a bee-line to Starbucks for some desperately needed caffeine. --It soon became clear that I hadn’t thought this process through when I was handed my coffee and had not an extra hand for the new extra wheelie bag - which would not stand on it’s own and kept falling over. Doh! The man behind me kindly offered to carry my coffee and follow me to my gate. I was so tired and grateful, I almost cried.

Found my gate, sat down the flowery couch bag and my coffee and turned to a couple across from me to ask them to please watch my bag a moment as I went to exchange the other. They politely obliged. When I returned 10 minutes or so later (with a hideous, though better constructed, primary-color blue bag capable of standing upright) and thanked them, they smiled, said I was welcome and told me that they had been waiting at the wrong gate as they stood to leave. Even after their realization, they had sat watching my bag as promised and patiently waited for my return...

My former boss, Dr. Mary Ruth Coleman, truly one of the most remarkable human beings I have ever known, refers to such happy, uplifting surprises as “blessings” and believes that life is full of such if you're open to it... I felt then in that moment, truly blessed. --Sometimes it is the kindness of strangers that makes all the difference in our lives, and sometimes when we’re lucky, we get to be the strangers.

I remember the day in June of 1999 when I returned to the states from living in Germany, leaving behind my husband and father of my child, and the only place that ever really felt like home for me. It was probably the hardest decision I have ever made... I had my entire life crammed into three of the biggest, heaviest suitcases ever packed in the history of people packing things as they were each filled with the stuff that meant the most to me: boxes and boxes of photographs and other priceless mementos I thought I might never see again if I left them behind (I mailed my clothing). In addition to the mega-luggage, there were four carry-ons, a stroller, a car seat, one hysterically barking Pug in a kennel, and my 18 month old non-ambulatory, non-verbal angel of a daughter, Isabel. --I foolishly left Frankfurt with no money what-so-ever and by the time I landed in LaGuardia (where I was soon confronted with the absolute rudest people I have ever met in my life), my bank account back in Germany had been emptied. Realizing I had less than an hour to get to the opposite side of the airport, I desperately asked for help with my bags and was dismissively told that was not the problem of airport personnel. An older woman who had been seated near me on the plane overheard my situation, turned and gave me eight dollars, hugged me, and disappeared before I could thank her. Out of nowhere appeared an immigrant porter who offered to help me with my bags. He told me we had to hurry. I followed him blindly with swollen eyes and tear-stained cheeks for what seemed like miles and into a tram. Halfway to my stop, another military wife who had been on my flight turned to me and said, “There’s twenty dollars under the lining of your daughter’s car seat,” and with that, she gave me a warm smile and exited the tram. --I have never ever forgotten either of those women. I don’t know their names nor do I even recall their faces, but I have never forgotten their immeasurable kindness on one of the worst days of my life... I gave all twenty-eight dollars to the porter.

Yes, MRC, you're right, life is full of blessings, often when you least expect them... I am grateful for all the blessings I have received in my travels through this life and I always try my best to pay it forward each and every time I am lucky enough to be the stranger.

"The opposite of love is not hate, it's indifference."

...Elie Wiesel

05 May 2011

picture day.

Today was school “picture day” at Bella’s school, for the second time this year.

A lot has changed in the tradition of school pictures since I was in grade school needless to say. Like digital cameras for starters. Also, when I was in school, you only had one photo taken once a year with the same background and pose. We dressed in our best, or rather what our parents deemed was best -- I mean, this was the ‘70’s were talking about folks, so ‘our best’ was very subjective and should be taken into account. Many months later, we would finally get our proofs to order from which we had to return so the orders could be matched up and then a few months after that, our photo package would arrive and most of them would be gone, swapped out with friends, before even getting off the school bus.

We did not have different poses to choose from and there were no retakes for the yearbook because you didn’t get yearbooks in elementary school. We did not have cute little magnets or bookmarks or trading cards and we didn’t have our names printed on our pictures. Our parents scrapped together and bought the big packages back then with plenty to give away to grandparents and family, display on walls and bookcases, and wallet sizes that were actually carried in wallets because that was the one and only time a year that most of us had “professional” photos taken documenting our youthful existence throughout our educational career. --And we sure as hell did not have to pre-order and pre-pay for photos yet to even be taken as is the policy with Lifetouch Studios - who received a nasty letter from me with my minimum order today, but I digress...

I remember many, many years ago on picture days at Cleveland Elementary School, we would all line up and march up with our classes to the third floor auditorium where all the school photo equipment was set up on stage. --The same stage my father, his siblings, and parents of most of the rest of my classmates had once strolled across when they had once upon a time graduated Cleveland High School. (Oh yeah, my Grandfather went there too.) The background for the vast majority of my elementary photos was always some seasonally-inappropriate artsy spring/summer woodsy medley (seen here) and a fake “fence” which we were posed against year after year in the exact same arm-crossed fashion (and me with my pinky finger dangling off the edge awkwardly as though it were broken, every single year) - as if leaning against a fence in the woods smiling like a dolt was the most natural thing in the world. But then again, it was the ‘70’s man, perhaps our school photographer was a hippy?

The absolute worst school photo theme ever in the history of school pictures was the “library / reading a book” look. This theme was shot in front of a comically unrealistic backdrop painted with bookshelves lined with books and required sitting at a desk with a colorfully illustrated kiddie book open (and held down by our hands so the pages wouldn’t flop around); that was 5th grade I think. O.M.G. did those suck a big one. I’m not even sure any of those still exist; I think I burned them all. --Oh, and then one year, 7th or 8th grade I believe, as we moved into a new decade of horrid fashion and tackiness, the creative directors of school photography in a brain-fart of inspiration keeping with the times, incorporated a high-back wicker chair into the setting. You know the ones. ...Actually, now that I think about it, I think they used the "library" background for that one too.

Yes, picture day always yielded a surprise because you never knew just what kind of God-awful tackiness they might spring on you next until you walked into the auditorium and got in line with your class. Just when we got used to the fence in the woods and all the photos in our homes matched, they went and got all crazy on us.

I honestly don’t think I have a single decent school picture of myself but then again, isn’t that the point? Everyone looks awkward and clumsy with freakish growth spurts, bowl-cut hairdos, and zits. Not to mention the ever classic deer-in-headlights expression that inevitably happens after shooting a couple hundred kids and the photographer is ready to get the heck outta dodge. Some of my school pictures could most certainly rival the DMV’s most memorable shots. And that’s pretty much why we buy those stupid things -- for the nostalgia and comedy. Few things are more fun than flipping through years worth of bad hairdos, bizarre clothing, and perplexing expressions. I mean, nothing says comedy like a snaggle-tooth smile in an obnoxious big-collared nylon Saturday Night Fever shirt leaning against a fence in the woods with a broken finger... except maybe posting those same pictures of your friends on Facebook. ;-)

"Most things in life are moments of pleasure and a lifetime of embarrassment; photography is a moment of embarrassment and a lifetime of pleasure."

...Tony Benn