DISTURBING RARITY REALITY!


http://wereblog.com/12-year-old-boy-with-a-rare-condition-with-his-head-hang-180-degrees

This is one of the reasons why my blog, Special Persons are People, Too! got conceived.

It’s not much really as I have failed to maintain it thinking it was a futile attempt at publicizing what my thoughts were regarding things, other special persons, and my pathetic quest to know more about my congenital defect. I did not have the absolute clarity as to the purpose of my putting up a blog. I felt it was useless; and my thoughts were: ‘Who am kidding? What in the world was I thinking putting up a blog nobody wants to read? To think I’m not an accomplished writer! Who cares about things like this?’

After several years of hiatus, I finally found better motivations not only to keep my blog afloat, but above all, to make something out of it as an instrument in service of humanity. On top of writing and sharing my thoughts and that of others’, I shall try to promote better understanding and awareness about us as God’s special creatures, to disseminate information as to the legitimacy and morality of our rlghts and privileges as also members of the society who ought not to be discriminated, oppressed, persecuted, looked down upon, bullied, and deprived of our basic needs having been borne to a society that should respect and celebrate those who are ‘slightly different’. It’s gonna be one tough journey; but we all have to start somewhere.

I pray for wisdom and resources for whatever purpose The Universe has drafted and designed for me.

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MY FRIEND LYLE


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My friend Lyle was born male. Named John Kyle Tutor, she said she just coined her nickname that way to make it sound like her other boy name. She had always been effeminate and her choice of gender was highly respected by everyone in her family.  She says she is very lucky for having the kind of family she has because, compared with others just like her, her choice was never doubted;  they just accepted her decision with not much ado.

Outside of her clan, however, was a different story.  Although her home life has been happy and easy, in the real world was the exact opposite. Not only was she mocked for being a member of the third sex; she was, worst of all, constantly bullied  for walking with a limp.

When she was yet a toddler, she was in the care of an aunt when Lyle was diagnosed with poliomyelitis (or commonly called polio), a highly infectious viral disease that targets the spinal cord affecting mainly young kids. It results in paralysis of one or both lower extremities, thus one or both legs. It is debilitating and crippling in worst cases. For my friend Lyle, vaccination was too late.

With the unwavering support of her loving family, she vowed to be oblivious of what the world has to say about her. What mattered most was the fact that she stood by her Live and Let Live philosophy:  as long as she doesn’t hurt anyone, she has also the right to live her life like everyone else, no matter what.

Lyle is a graceful spirit loved by everyone she has come to touch the lives of.  She loves to have fun, and she’s never boring to be with. She tries to be there for her nieces and nephews, and she catered to the family business alongside her parents and other siblings.

She has the knack for business. Just recently, she branched out of the family business to set up her own niche in the same food industry with a franchise– and blessings– from her family. Her career keeps her busy, but she never fails to be there for those who need her.

Through sheer will power, happy disposition, and a resilient faith, she has managed to triumph over her handicap. That’s my friend Lyle.

THE PHYSICALLY CHALLENGED: a race forgotten, misconstrued


We call them freaks. We pay money to see them make fools of themselves.

We make fun of them as if their feelings don’t count. As kids, we harass them the first

chance we get. Because we have no tolerance for the askew, the crooked, the odd and

the physically gross or absurd. We think of them as non-human. Maltreatment and

injustice are only a common form of torment. .. (in this era wherein ‘beautiful’ is

defined by the perfection as to physicality, elegance and sophistication,and largely

depends on the carats of gems on the bejeweled class of the society where the rich and

the famous choke on over dosage of fame and overwhelming wealth).

In an age and time where everything gets fixed or “converted” into

something new and beautiful (at the right price) in the ultimate quest for the

preservation of youth and for aesthetics’ sake, some of us born rather ‘differently’ seems

to have been thrown in the backstage. Amidst the clamor and din of this fast and furious

rat race, these least of our brethren have been, since time immemorial, considered

second class citizens.

 

We tend to forget that amongst us, between the living and the dead, there

thrives a breathing, feeling faction of our race that silently, in the shadows, desperately

struggles to outlive a cruel, indifferent civilization where only the best, the brightest

and the most able have the privilege to rise up and hear the bells.

What does it mean to be congenitally defective today? True, more and more

consideration for the physically disabled and/or “special people” have never been better

with the rise in growing social awareness for the physically challenged members of our

society. Special seats, lanes, marked lavatories, especially designed walkways and

tracks, custom- made prosthetics, gadgets and what-have-yous became commonplace in

our feeble attempt to show them we care and that they count.

 

Truth is, these attempts are just to quench the guilt deep inside us. We

should be convicted and hanged for enjoying so much while they suffer in the shadows,

out of the limelight, unwillingly bathing in shame at the mercy of the bonds of

insecurity, hopelessness, envy and hate-forever stuck, forever needy and forever

irrelevant and useless. We should be fined and punished for the awesome feeling after a

nature trail hike where we got the chance to bask in the glory of seeing the world from a

different light and being able to fully experience all of its wonders. We should be

tortured and made to suffer for the awesome sights and sounds that travel makes

possible.

 

In the end, nothing can ever make up or suffice even, for the feelings of

deprivations and the pain and suffering of the physically unfortunate. These are beyond

reimbursement. Nothing can ever make up for the torment, grief and the sorrow that

inability and disability gift wraps them with at birth.

 

But everything gets to be alright

when we are loved. The world seems better, brighter. To quote anew, LOVE is the KEY.

ADAMS-OLIVER VS AMNIOTIC BAND SYNDROME


Special people, like the mentally retarded and the physically disabled, in the olden days, were considered second class citizens who ought to keep out of sight.  Despicable and shameful, they were treated like animals, left to rot in oblivion to live out their lives in misery and suffering.  Whether they are indeed accidents of nature, borne of the scourge of  the gods, or some kind of genetic anomaly, one thing is for certain:  it’s not their fault how they turned out to be.

It has been a long time that I have been messing with the web, but it never occurred to me to seek out people with the same condition, or to even just research about it. Having been born with a congenital defect, at 37 years old, it was just last week that I decided to explore the world where one-half of me is an endemic inhabitant.

Initially, I surfed, read, followed links, to no avail.  My oddity, so to speak, cannot be found. Images, images, images- my eyes watered and I burnt candles for nights-but, nada. The gross and the macabre were in front of me (thank God I only have this kind!);  my heart broke to see worse persons than I am.

Browsing for images yielded no positive result, so I turned to reading until my eyebags got swollen and my eyes bulged like burbots‘.  It’s so elusive- there must be something! What, I’m not even among the categories and types? Later, I realized that I had a hard time because I wasn’t using the right tags.  But how could I, since I myself was at a loss as to what my deformity was called like!

Finally, I got to Adams-Oliver Syndrome and then eventually to Amniotic Band Syndrome.  I could fit in to either of them, but I still need more time to delve deeper.  One fact, though;  whichever syndrome I get to ‘fit in’, I am the only one with this kind of foot defect.  For, NO TWO CASES ARE EVER ALIKE.

Consequently, I will be spending more time learning about my deficiency.  Prior to last week, I’ve never encountered both syndromes before.  I guess I didn’t really give much thought to my defect as much as I should have, in my feeble attempt to ‘belong’ with the masses. Nevertheless, I’m grateful for having had such understanding family and friends to have had the chance to be considered ‘normal’ in spite of what I truly am.

For that, I am very grateful;  and I feel truly blessed.

KYLA


I saw her on teevee today.
I almost thought, “how cruel God must be”.
I almost cried; seeing her was just like your heart was crushed.
Such fragile ‘thing’… It must be very hard for her mum…

Kyla was auditioning for a teevee show.

The show is the local equivalent of America’s Got Talent television program. She was auditioning! Before her turn to show-off, nobody would ever believe she was there for the screening. SCREENING!

Did you say, screening? Screening as in like auditioning? As in: a trial performance to determine suitability for a contest? A try-out? An elimination exercise?

Yes. And for a prestigious national television show, at that.

Because Kyla looked like she’s just a baby, you can never tell otherwise. Her mother carries her around. She doesn’t have the capacity or functionality to walk. Her legs couldn’t support her. All her extremities seemed very fragile, although her hands looked ‘normal’. I couldn’t see her legs and feet, though. She was wearing stockings. But I could clearly discern her legs’ length and how useless they are.

Kyla is 11 years old.

When it was her turn to ‘try-out’, she was on a chair. A microphone was already set up for her. She sang a song that made her get in. She did it! She’s gonna be joining in the contest proper! Bravo! Kudos!

Whatever the turn-out of the contest proper doesn’t matter. For, at this stage, it cannot be determined yet. But one thing is clear: her strength of spirit is amazing. The mere fact that she went through the eye of the needle is an extremely awesome feat.

Good luck, Kyla!

ABOUT ‘SPECIAL PERSONS ARE PEOPLE, TOO!’ BLOG


Special Persons are People, Too is a literary hub where everyone is welcome to interact with persons with congenital physical deformities or defects, give advice, offer opportunities, or just simply to give support and show they care.

Being provided a fantastic site you can call your own is simply irresistible.  Best of all, you can do whatever you want with it (for as long as you don’t go over the boundaries). It’s like winning the lottery;  a once-in-a-lifetime opportunity that you feel you have to really take care of and make the best of.

Thanks to the kindness of all the staff at wordpress.com and the community and other outfits that support them. Words can never suffice to show our gratefulness for these selfless people. Without them, Special Persons are People, Too could not have come into existence.

People like me-bloggers, authors/writers, companies, associations, and other organizations geared towards sharing and community interaction to foster goodwill among those who believe they can make a difference, now have a great avenue where they can impart insights and other important stuff to the world.  It’s simply awesome!

Here, we hope to discuss about, and share experiences of, people who have physical deformities- their adversities, exploits, and most of all, their TRIUMPHS over their misfortunes.

Also, we will be posting about Bacolod City as a gateway to extend a glimpse about where we hail from, and we hope to feature articles about individual persons, entire organizations, government agencies, and other professionals somehow akin to our city and our advocacy.

We’re a newbie in this endeavor, and whatever help we can get, we would appreciate it very much.  Kindly feel free to contact us for any suggestions, literary contributions, advice and other relevant things we need (like topics, articles, or links that can further help us improve).

Thank you.

(PERILS OF) MOTHERHOOD TOWARDS THE PHYSICALLY CHALLENGED


As if motherhood is not bad enough. For someone with 4 boys. And unfortunately, one of them has a congenital physical deformity (clubfoot). And no one to rely on but herself. To help out with the bunch of them. AS IF(!) motherhood is not bad enough.

That must feel like the whole world, with its nearly seven billion human inhabitants-and their savvy gadgets, and other worldly possessions, not to mention the gazillion tons of waste they produce every single second-is upon her callous shoulders. What a pity for someone who’s always being there for her kids-never complaining, never grouchy, never blabber-mouthing.

Having to ‘UFC’ 4 boys every single day (for how long, only time can ‘tweet’), is, without doubt, a very strenuous task. It’s amazing how she refuses to take a single day off. For some peace, for some respite from the chaos, for some time for herself perhaps? Nada. That really bothers me!

Worse, she gets to be blamed as the catalyst for one of her kids’ misfortune. As if, again, she intended, meant, or desired in her heart for him to be borne that way. Whew! And worst of all, he tells it to her face. I guess that hurts the most. Where did she go wrong, she can only ask herself in utter helplessness.

For a 12-year old with a congenital physical condition, which happens to be the cause of all his misery, anxiety, insecurity, disenchantment and depression, it is but typical to blame someone- if not something- for his demise. The closest, most logical ‘culprit’ would be his mother, since child-bearing is supposed to be HER job.

For that kind of mentality to go on unchecked could be a disaster. I really think that something has to be done right away. For the child to foster that kind of attitude towards his mother is definitely unhealthy. Furthermore, professional help or a good mom-and-son talk ought to ensue. The son has to be made aware of the consequences of his behavior, and that it doesn’t resolve the problem but consequently aggravates it. After all, it’s something that can never be undone; there’s no point playing the blame game, to think it’s not actually his mom’s fault.

For parents of the handicapped, it is but crucial that emphasis be put on the careful assessment of the emotional health and over-all stability of the child. They are very sensitive. They tend to get hurt easily (which most often makes them aggressive and/or defensive). Much consideration should be taken as to the emotional re-enforcement special persons need. Extra care, love, understanding and attention are their life lines.

Because where we dwell is a cruel world, and since the physically defective is obviously no-match for the harsh, brutal reality called life, the only pedestal for the weak is strength of spirit. Hone and sharpen the heart and mind and the spirit gets strong. Strength of spirit is strength of mind and heart. Being armed with this weapon, the child has a chance to win.

Love is the key.

PERILS OF THE PHYSICALLY CHALLENGED


I’m a disabled person, handicapped;  a freak, an odd one.  Call me anything but normal, because I’m not like you at all.

You see, I walk with a limp, and forever can never wear fancy footwear.  And that means stylish, elegant clothes are allergic to me.  What a shame!  But, who cares?  It’s not the end of the world, or something.  Fact is, it’s not my fault I was born with half of my left foot missing.

Birth defects may be mental or physical.  The most common and the most alarming I think, is Congenital Heart Disease. But I won’t talk about that for now.

Most physical defects are easily corrected, especially in childhood.  Corrective and plastic surgery can fix the problem;  gadgets, and other what-have-you’s can aide the handicapped.  With breakthroughs in Medical Science and advances in technology, innovations have tremendously helped the physically challenged lead better lives.

Anyway, growing up with a physical defect haven’t been easy for me.  I know firsthand how it is to grow up with something that makes you different from the rest.  It’s like taboo;  it’s there, it exists; yet, it’s not something that you’re supposed to talk about. Everyday was a struggle; for it meant I had to be out of the house to face people, and limp, limp, limp.

I was miserable each waking hour; I hated everything and everyone especially my parents, whom I blamed for my misfortune. As much as possible, I avoided people.  I was too ashamed, inferior, insecure and depressed to be mingling with the “normal” ones.  I remember crying a lot at night in self-pity, feeling sorry for my circumstances .

We’ve always been branded as freaks, abnormal, handicapped, disabled, scums of the Earth, scourges from the gods, aliens, even.  Heaven knows how much that hurts, the branding.  Mockery, discrimination, and social stigma take a great toll on our emotional health. Worst of all, we have to live with the “curse”.  It was like a battle for survival that you know you’d never be able to win.

That was then, more than 20 years ago.

For now, I’m starting to embrace myself for what I was, what I am now, and what I am becoming. I now consider my physical anomaly a boon, instead of a bane. I don’t care what other people may think of me; I don’t get affected by that, or by anything trivial, anymore.

And I’m proud to be finally heading somewhere.