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.

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.