My Thoughts about a Boy in Australia

Late last Friday afternoon I saw a quick news bit about a boy in Australia who has been bullied due to his dwarfism condition and that his mother posted a video of him breaking down, wishing he could die. The bit ended by praising all those who contributed to a GoFundMe campaign so he can go to Disneyland. I then Googled the story and posted an initial opinion on my Facebook feed with one story link describing the situation in more detail; I commented that I had mixed feelings about same. I subsequently deleted replies that were debating whether or not the story was true. My mixed feelings were not about the veracity of the story but rather how the mother handled her son’s distress by sharing for all the world to see…and then “reaping” the benefits of, if you will — in a more suspect way than not.

Those who know me know that I have a dwarfism condition — now for 52 years since birth in 1967. Those who don’t know me can read about me at www.justcallmegeri.com. Diastrophic Dwarfism, a rarer form than Achondroplasia, the type that the young boy has, is what I have lived with for over 5 decades. I don’t dispute this now 9 year old boy has been made fun of his entire young life. I found stories about him from a few years ago, one referencing a dog he received to be a companion and to help him deal with his different-ness. Certainly I can relate to being made fun of in public and yes, even by adults. (Some have heard and/or read about the Kohl’s story) “What’s wrong with her?” or “what happened?” are questions I heard well into my 30s, even 40s, mostly from children, but at times from those old enough who should know better. I still hear some of the former when out in public, which is unfortunately not as often these days after several surgeries went awry the past ten years. The most egregious questions were those asking about Thalidomide (a drug expectant women in the 1950s were given that resulted in birth defects) and many actually insisting that I must have been a Thalidomide baby when I stated I wasn’t. One would think I would know the cause of my condition, a recessive hereditary one.

In my presentations to school children about my life story and experiences growing up, I share that I was more fortunate than not in that I wasn’t bullied a lot from Kindergarten through 12th Grade. Yes, there were a handful of incidents that I knew about (because happened to my face), but I was mostly left alone to be just Geri. I also share that I’m grateful I didn’t come of age in the social media age. Surely I would have been targeted much more. On the flip side, because social media was not around during my formative years, there were no videos or pictures to post that may have gone viral. Nothing that would get me invited to appear on Ellen or any number of talk shows. Instead I heard and still hear my Mom’s (now gone nearly 5 years) voice that I wasn’t to expect a red carpet everywhere I went/go or that nothing that would be handed to me on a silver platter. Life was indeed tough and I wasn’t dealt a “fair hand” to be sure, but that I shouldn’t feel sorry for myself or think that others would automatically. In fact, I would more often than not chaff at special treatment such as being invited to the head of the line in a busy bakery during holidays when I was still upright and walking. (Admittedly, I don’t mind as much these days as my limitations have increased.)

In my 52 years trying to figure out my purpose, I have wanted – and this is not easy to type – to die at various times. The few times I was made fun of especially in Middle School I didn’t tell anyone, not any of my sisters let alone my parents or teachers. Life is definitely more complicated these days especially with the blessings and curses of social media. Bullying can be rampant, anonymously so. Praise and positive attention can also result from postings of good and bad behaviors.

I do not believe this young boy made up stories of being mistreated to the point of him wanting it to end…to the point of him declaring he wants to die. And while awareness continues to be needed of all those on the outside, on the periphery, those to be targeted because of differences, I disagree with how this mom went about to bring her son’s experience to light. In my opinion only, I felt she exploited her son’s pain and made it very public to intentionally garner sympathy that would perhaps result in enough attention to “reward” that pain. I don’t know if I’m making sense. And I absolutely know my Mom would never have done similar even if an option back then. No doubt some reading will take exception to my take on this story. Some might even argue that I’m jealous (I have even asked that of myself) that social media can shower praise and vacation trips on various folks with various kinds of trying circumstances these days. I wrote similarly after the Boston Marathon bombing that suddenly turned those significantly injured into heroes.

There are countless folks around the world who live in trying circumstances, due to congenital disabilities (either physical or developmental) or acquired life changing injuries who the public will never know about. Do more folks described above deserve GoFund campaigns to send them on trips to Disney or other destinations, no. Is this a nice perk of being different, perhaps?! Should it come about by exploitation … no … again, not in my humble opinion. When there is a legitimate need for assistance, then folks should ask.

I sincerely hope this boy’s experiences are “real,” not because I want him to have suffered or continue to, but because I don’t want people to have been fooled and more importantly, I don’t want folks’ generous natures to have been taken advantage of so that they may be less generous in the future. I do not believe people deserves rewards just because. I sincerely hope, too, that others do not take this as an example to garner sympathy for a magical trip. After the high of such a trip, the underlying behaviors remain. I hope the mother, school officials and parents involved handle such bad behavior with those perpetuating such first and foremost.

Rewards?

Rewards?

Musings on Birthday #49

Since Sunday, I have shared a slew of Baby Pictures on my personal FB account. The Baby Pictures only begin at approximately 12 months though. I’ve definitely been looking back at a time I don’t remember. I’ve also been reflective as my 49th Birthday approaches Saturday. Some friends who I adore believe in the idea of a month long celebration!! Being a middle aged single woman sans partner of any kind, being motherless and currently being more housebound than not means I don’t have lots of ways to celebrate for long, let alone a month, but I will admit I DO LOOK FORWARD to my Birthday each year.

Quite a while ago, a person commented that Birthdays really aren’t that important – and she doesn’t care much when they roll around… the underlying message being that I was too old to want a big deal made of my special day. This person also demeaned me and a dear friend who came to share in my grief when my Mom died last year, sneering when knowing we were sharing a King size bed in the hotel.

Yes, I do look forward to October 22nd each year – though the day comes with sad thoughts and lingering questions that will trouble me to my end of days. I was born unbelievably at 5:15 AM (never again would I arrive anywhere so early!) at White Plains Hospital to an Italian couple. I will likely never know if I was ever held by either the man or woman – or if only by the delivery doctor and nurses and later nursery staff. I’ll never know if there were any tears of joy (doubtful) but rather tears of shame or dare I wonder, horror. Logically and intellectually, I can understand the fear and disappointment of the couple who had already lost a baby daughter a few years earlier to the same genetic condition. That baby died within a few days. For whatever reason unexplained, my internal health was sturdier if not my skeleton make up. Diastrophic Dwarfism (as I first remember the condition being called) or Dysplasia is a recessive hereditary condition so both haywire genes were present from the egg and sperm in the embryo that resulted in me. Having taken Anatomy and Physiology some time ago now for my MS Ed/CTRS requirements I was amazed how the slightest change can result in either life threatening illness and/or body malformation, even something as seemingly minute as a missing protein.

Many people know by this blog and website that I give school presentations and give older students an overview of my life story including details of being given up by my biological parents. Thankfully, I was given the chance to live out in society rather than an institution as was the usual decision through the end of the 1960s. And despite an handwritten note of instruction “No Pictures to be taken of this Baby” put atop my Hospital records (copies received when in my mid 20s), Department of Social Services workers decided to put my picture in the local county newspaper seeking a family. The family decided upon was the Marianos, then of Bronxville, NY – Doris and Bill with their daughters Joanne, Beth and Andrea.

Sadly, I lost both my Mom and Dad in 2015 so my main story tellers are silenced forever but I have memories of the stories told to me and pictures that accompany the story. An official family portrait and individual baby pictures were taken soon after my arrival. And there would be many more pictures over the years. What a gift of acceptance and love.

Ironically, I developed a love/hate relationship with pictures. After my cute baby days were over and I entered the awkward teen years and adolescence doubts took hold, I really did believe I was a freak. I so wanted people to want to take my picture and then when they did, I would pick apart each photo to decide if I looked weird or not. I’m particularly sensitive to anything shown below the waist. Last year was my HS Class of 1985’s 30th Reunion. Though not pleased I was confined to a wheelchair and slouching back, I nonetheless decided to glam up as much as possible and was thrilled when friends/classmates wanted to take pictures. Ridiculously, I still remember there were no candid photos of me in our Senior yearbook. Of course I was never a cheerleader or played on sports or part of the popular cliques but I still wonder why I didn’t rate one candid back then and chalk it up to my not being pretty enough.

Once during a summer camp week away, fellow campers convinced two sweet boys with developmental disabilities from Long Island that I was cute and interested in them; the message being that only those with diminished capabilities would be interested in me. I never told anyone about that until a year or so ago, but the humiliation has always stayed with me. That and women whose sons I “crushed” on would subtly tell me that girlfriend or wife material I would never be…messages I can never shake though I desperately wish I could.

Now back to my Birthday …the big 49! 49 is big, one might ask? Well considering I have vivid memories of wondering if I’d make it to 50, yes, 49 does seem to be a milestone. A few times over the years I asked a couple of doctors, two women actually (maybe I felt safer asking the tough question with them), what my life expectancy was. Both times the responses were “Don’t really know.” Yet, doctors have looked after me and have done what’s needed to prolong my life. During 10th Grade, I underwent a tremendously difficult spinal operation that left me in a body cast for 6 months and cut short my Sophomore year. The reason given was that my spinal curvature was increasing and would “crush” my heart. In 1992, a C3-C4 degenerated disk was removed before it could slip and slice through my spinal cord. In 2015, there were two more arduous and complicating spinal surgeries to allow continued breathing and hopefully a return to mobility. 50 doesn’t seem to be much of a question mark anymore though my other questions of whether I’d still be scooting and doing acrobatic leaps on/off the Throne and over the tub wall are more or less answered.

The weeklong retrospective back to baby pictures day has helped me realize how far I have come. I may not be so adorable anymore (really what 49 year old respectable woman wants to be cute?) but dang, when I try …I can be pretty and even sexy! Happy Birthday to me!

Judgements

Profiling continues to be a hot topic in the news and social media.  I live in the NYC metropolitan area, but even if I didn’t, challenges to “Stop and Frisk” have made national headlines.  And though the immediate furor has subsided some, the Trayvon Martin tragedy is never far from people’s minds.  I honestly wasn’t sure I would dip into this topic but a recent revelation has prompted me to go full in.  Ironically using the water image is dangerous as I cannot swim due to my physique.  My limbs are too short to sustain treading and my bottom is definitely heavy enough to pull me under.  Regardless of the obvious dangers — I am “scooting” (as I’m unable to stand on my own legs) into these stormy waters.

Now I need to switch gears briefly to explain why I decided to wade further in.  Duck Dynasty is the reason, or rather one of the leads of Duck Dynasty is.  I’m not sure I would even have noticed this news item if Duck Dynasty had not been all over Entertainment news media the past week.  Somehow the fascination has bypassed me the first three seasons it has been on the A&E TV channel.  With its fourth season premiere last week the “stars” of this now reality favorites have been all over the talk show circuit promoting the new episodes.  Truth be told, I’ve actually used the remote control each time a segment would start with family members of this multi-million dollar sporting dynasty.  Yet, a snippet a few days ago caught my attention and I can’t even tell you when I heard it or where I saw it.  Apparently during one of these recent TV promotion interviews, Jase Robertson, of this Duck Dynasty, says he was escorted out of a NYC hotel after being mistaken for a homeless man.  For those who, like me, were oblivious to all things Duck Dynasty, here is a link about its program and its family members:  http://www.aetv.com/duck-dynasty/about/

Similarly, an erroneous judgment was recently made public when Oprah Winfrey was also on an extended media tour promoting her new movie.  When shopping in an upscale Swiss boutique, Ms. Winfrey was met by a clerk who told her she wouldn’t want to see an expensive handbag. Ms. Winfery believes the clerk was ostensibly thinking her customer would not be able to afford such a luxurious item. There has since been some back pedaling and apologies regarding this latest “misunderstanding,” but still the origins of this incident seemed to have been based in part on a judgment made by the clerk.

These two situations come to light after President Obama made public comments after the verdict in the killing of Trayvon Martin in Central Florida.  George Zimmerman was found not-guilty of the second degree murder charge of teen Trayvon Martin.  President Obama spoke of knowing what it is like to have people react nervously when entering an elevator or being followed in a department store.

Now this is where the “scooting” into these waters can quickly turn dangerous should a wave come and knock me over.  I will not presume to know what it is like to inhabit a body of a different color but I do know what it is like to inhabit a body of a different looking, and, for most, a misshapen, form.  The reaction may be born of a different underlying fear, but I also know what it is like to enter an elevator and have riders look the other way.  I also have uncomfortable memories of pregnant women look at me with a passing wave of worry in their eyes.  Fortunately, this occurrence does not happen as often these days and I have to guess it is because of advanced pre-natal testing.  For a separate blog topic one day I’ll address how technology advances in pre-natal testing is a worry for me in other ways.

In 2007 I entered an upscale hotel in Rome, Italy and while I was not escorted out I have the distinct memory of being looked down upon (literally as I am only 4’6”) by the Front Desk clerks.  Their expressions were visibly those of “who is this ‘creature’ walking into our beautiful establishment?”  My trip to Italy was a 3 city tour for a 3 part celebration:  My Master’s Degree Achievement –Turning 40 – Honeymoon for One (as I can’t wait forever).  Rome was my second stop of this perhaps once-in-a-lifetime adventure.  I had already been to Florence and stayed in a 4 star hotel and I had not felt that same sensation there.  My appearance in the 4 star hotel in Rome was not expected or welcomed as I clearly did not measure up to their usual fashionable clientele.  What I do remember is I purposefully wore my late grandmother’s stunning sapphire and diamond ring in an attempt to lend myself an air of sophistication, one that is not normally associated with my outward appearance.  I am not a wealthy person with money to throw around, but again staying in higher end establishments was a purposeful decision (though the Italian Adventure definitely broke my personal bank).  This was a  personal social experiment that I wanted to undertake as well as to see “bucket list” worthy historic and cultural sites.  I never did overcome that initial distaste from the Rome hotel staff; I cut my stay short and left a day early for Torino.  Like the staff did in Florence, I was warmly welcomed to the Winter Olympics Host City of 2006 and not made to feel as though I didn’t belong.

Haughty reactions were and are not limited to Italian cities.  I have walked into upscale stores here in the US and in my local area.  There are still times when I get the distinct impression staff would prefer me not to be a customer.  I am not as mobile as just 5 years ago so my world has shrunken some.  I am however still traveling – most recently to Chicago and Iowa – and I am still acutely aware of people’s reactions to me.  Again, I emphasize the reaction is not of fear of personal safety but fear of the unknown and the uncomfortable.  With this always in mind, I either was born with this ability or came to quickly learn it (survival of the fittest?) …to break the ice with those around me and be the one to start talking and/or joking.  Laughter is a great common uniting force; besides, it is quite contagious (much like yawning).  When people are laughing together there is little room for fear or uncomfortable feelings to develop.  I am an unabashed FB devotee and I enjoy reading people’s posts, viral graphics/videos and amusing observations on life in general.  A few days ago I read a post where folks were discussing how riding in an elevator can be most uncomfortable unless one goes in with a fun attitude.  I wish I could recall now where I read it and can go back and quote some of the suggestions people shared on what to say when entering.  Such a wonderful idea really to go in with the intent to break tension instead of adding to it with silence and foreboding.

Social discrimination is prevalent in our society, no question about it.  It is not, however, limited.  Social discrimination touches upon many different kinds of differences …of sexual identity, of religion (especially when outerwear is noticeable), of weight, of color, of food diets, of mental illness, of city inhabitants vs. rural residents, of trailer home owners, and so much more.  “Freak” circus side shows are not from such a long time ago.  I understand (though I have not personally gone out of my way to find out for sure) there are still dwarf tossing and midget bowling events taking place world-wide.

I am nowhere near a rocket scientist or a neuro-surgeon …I am just one who tries to think of ways to make things better.  I may be naïve and I certainly was not always generous with thoughts to others.  When I was younger I would cry out many a night in the dark, “why me?”  Folks who wanted to be well-meaning would offer the oft used encouragement “you are so strong and would not get more than you can handle.”  Another comment from a loved one has stayed with me some 30+ years later, “you are lucky because all your differences are evident.”  I think this family member meant that I wasn’t struggling with unseen issues such as mental illness or other non visible medical problems.  Does it suck that kids point to me in stores and ask their parents “what’s wrong with her?”  Yes, quite simply, it does.  Must I accept that this occurrence will happen again when shopping or eating out?  Yes.  Would I like the world to change instantly and all prejudice and profiling and instant judgements to disappear?  Sadly, I don’t think this will ever happen.  But what is within my power is to not act angrily in response but to show by example and to teach and to reach out instead of hiding behind fear or resentment that ‘life isn’t fair.’  Is it a burden to not be in this all for myself?  I used to think so.  Now, I understand it is a part of who I am.